Annual Review 2017 with 2016 - 17 Financial Highlights

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Annual Review 2017 with 2016 - 17 Financial Highlights
Annual Review
         2017
           with 2016 - 17
     Financial Highlights
Annual Review 2017 with 2016 - 17 Financial Highlights
Contents

The Snowdome Foundation,        Message from the
                                Chairperson and CEO
                                                                             4

making hope real in the fight   Highlights of 2017                           6

against blood cancers –
                                Achievements Since 2010                      8

                                Snowdome Funded                             10

leukaemia, lymphoma
                                Research Projects
                                Effecters of Change                         14

and myeloma.
                                for Diversity

                                Donor Events                                15

                                Christine and Bruce Wilson   16

Blood cancers are the third     Centre for Lymphoma Genomics

                                Eve’s Patient Perspective                   18

leading cause of death by       Translating Research into
                                Clinical Practice
                                                                            19

cancer in Australia.            A Vision of Improving
                                Personalised Cancer Treatment
                                                              20

Each year over 12,000
                                Researcher Profile                          22

                                The ‘Bloody Good Dinner’                    23

Australians are told they       Fundraising Events                          24

have blood cancer.
                                Maddie Riewoldt’s Vision                    28

                                Board of Directors                          32

The Snowdome Foundation’s
                                Financials                                  34

                                A Long-Term Philanthropic                  40

mission is to accelerate
                                Partnership

                                Appreciation                                41

next-generation treatments      Committees and Executives                   44

for Australian blood cancer
                                Bequests to Snowdome                        46

                                Dedication                                  47

patients to help them live      Cover page

longer, better lives.
                                Dr George Klempfner and Mrs Yolanda Klempfner AO
                                Current page
                                Millie Inman

2                                Snowdome Foundation – Annual Review 2017     3
Annual Review 2017 with 2016 - 17 Financial Highlights
Message from the Chairperson and CEO

                                                   The Wilson Family and                        In 2017, we launched our collaboration       identifying only one protein (CD-19)
                                                                                                with the Epworth Medical Foundation          on cancer cells. Advances have
                                                   Snowdome hope that acts                      to co-fund research in the novel area        enabled genetically modified T-Cells
                                                   of huge generosity such                      of circulating tumour DNA (ctDNA).           (Car T cells) to also identify a second
                                                   as setting up the Wilson                     The use of ctDNA extends to early            protein, CD-22. Lastly, significant
                                                                                                detection of cancer, monitoring              improvements are also being made in
                                                   Centre will inspire others                   progression as well as determining the       controlling follicular lymphoma using
                                                   to donate.                                   best treatment path. The prospects           an agent already approved for treating
                                                                                                are exciting, however more research          chronic lymphocytic lymphoma.
                                                                                                is required before it replaces current
                                                   It was a momentous year for                                                               In 2018, the Snowdome Foundation
                                                                                                procedures. Through this partnership
                                                   Snowdome and Australian blood                                                             will facilitate ‘making hope real’ for
                                                                                                the Epworth Medical Foundation
                                                   cancer patients as we officially                                                          Western Australian blood cancer
                                                                                                is providing almost $1 million in
                                                   launched the Christine and Bruce                                                          patients. Snowdome will collaborate
                                                                                                ‘matched funds’ to Snowdome-funded
                                                   Wilson Centre for Lymphoma                                                                with a number of partners to establish
                                                                                                research. Snowdome is seeking further
                                                   Genomics at the Peter MacCallum                                                           an internationally recognised Western
                                                                                                donations to conduct this research.
                                                   Cancer Centre. This extraordinary act                                                     Australia Lymphoma Centre of
                                                                                                To understand more about this novel
                                                   of generosity by the Wilson Family is                                                     Excellence. This Centre aims to
                                                                                                and exciting research see page 19.
                                                   so important for a number of reasons.                                                     improve the outcomes of blood
                                                   Firstly and most importantly, it will help   We set ourselves a challenge in 2017         cancer patients by improving the
                                                   thousands of Australians diagnosed           to raise $300, 000 at our first ever         patient experience, facilitating access
                                                   with blood cancers to access more            ‘Bloody Good Dinner’. The event was          to new treatments and by fostering
                                                   personalised treatments. Secondly,           co-hosted with Maddie Riewoldt’s             collaborations with other recognised
                                                   the Wilson Family and Snowdome               Vision in June and was a phenomenal          cancer centres around the world.
                                                   hope that this act of generosity will        success, raising over $400,000.              You can read more about Dr Chan
                                                   inspire others to donate and assist in       The night was a spectacular showcase         Cheah and his hopes for Western
                                                   ‘making hope real’ for blood cancer          of the work both organisations have          Australian blood cancer patients on
                                                   patients. You can read more about the        achieved in a short amount of time.          page 22.
                                                   Christine and Bruce Wilson Centre for        Funds raised at the event have gone
                                                   Lymphoma Genomics on page 16.                towards important research to identify       At Snowdome our mission is to
                                                                                                critical genetic factors that contribute     accelerate next-generation treatments
                                                   Good governance is essential to the                                                       for Australians with blood cancer to
                                                                                                to greater predictability of a bone
                                                   success and ongoing viability of a not-                                                   live longer, better lives. We cannot
                                                                                                marrow transplant being successful.
                                                   for-profit organisation. At Snowdome,                                                     achieve this without the support
                                                                                                We look forward to collaborating with
                                                   we aim to keep our expenses low to                                                        of our major donors. Our heartfelt
                                                                                                Maddie Riewoldt’s Vision in May 2018 to
                                                   ensure as many funds as possible                                                          thanks goes to these generous
                                                                                                host another successful ‘Bloody Good
                                                   are channeled towards blood cancer                                                        individuals and we thank them for
                                                                                                Dinner’. Learn more on page 23.
                                                   research and clinical trials in Australia                                                 their belief in Snowdome and our
                                                   to help patients live longer, better         In 2017 we saw advances in the               talented researchers. Our volunteer
                                                   lives. Ambitiously, Snowdome set             development and availability of novel        Board and Committee members, pro
                                                   an operating expenses to revenue             treatments. The listing of ibrutinib, a      bono and event partners, executive
                                                   ratio target of less than 15%. In            breakthrough treatment for leukaemia         team, all supporters and the medical
                                                   2016 - 17, Snowdome-specific activities      and lymphoma, on the Pharmaceutical          researchers and clinicians are critical
                                                   delivered an 8% operating expense            Benefits Scheme in December, was             to Snowdome’s success. It is their
                                                   to revenue ratio. When The Pratt             a significant development and relief         combined passion and commitment
                                                   Foundation’s CEO funding is taken            to many patients. Ibrutinib, valued at       that is ‘making hope real’.
                                                   into account, Snowdome had an                approximately $187,000 per treatment,
                                                   adjusted ratio of just over 5%. This is a    is now affordable as government              We are delighted to share the
                                                   remarkable achievement and it would          subsidies bring the treatment down           Snowdome Foundation’s 2017 Annual
                                                   not be possible without the generosity       to $39.50 per month or $6.40 for             Review and 2016 - 17 financial highlights
                                                   of our pro-bono partners who                 concessional patients. Advances              with you.
                                                   contributed over $400,000 in services        are also being made in genetically
                                                   during this period. The end result is that   modifying patients’ T-cells to seek          Thank you for your time,
     Roger Greenman AM      Miriam Dexter          more of our funds go directly towards        and destroy cancer cells. In the past
        Chairperson      Chief Executive Officer   ‘making hope real’.                          this treatment strategy was limited to       interest and support.

4                                                                                                                                          Snowdome Foundation – Annual Review 2017    5
Annual Review 2017 with 2016 - 17 Financial Highlights
$5.5                                                  We were honoured to

                                                                                                                  2017
                                                                                       be the featured charity
                                                                                        for the Bulgari Festive
                                                                                       Season Celebration in
                                          million
                                Christine and Bruce Wilson Centre
                                                                                      Melbourne with proceeds
                                                                                      going towards the Wilson    Highlights of
                                                                                         Centre, see page 24
                                 for Lymphoma Genomics at Peter
                                MacCallum Cancer was announced,
                                           see page 16

    The Wilson Centre aims to
                                                                                                    Prof. Miles
  provide genomic testing to over                                                                   Prince AM

    1,000
    patients per year across
   Australia, New Zealand and
    Asia Pacific, see page 16
                                                                                                                                                                          We welcomed Mr John
                                                                                                                        In collaboration with Maddie Riewoldt’s          Salvaris to the Snowdome
                                                                                                                        Vision, we presented the ‘Bloody Good              Board and farewelled
                                                                                                                         Dinner’ for 416 guests and raised over            Mrs Nichola Patterson
                                                                                                                                                                          as she retired from the

                                                                                                                      $400,000
                                                                                                                                                                             Snowdome Board,
                                                                                                                                                                                see page 32

                                                                                                                         to support innovative research that
                                                                                                                         aims to lead to greater predictability
                                                                                                                          of a bone marrow transplant being
                                                                                                                                successful, see page 23

With The University of Melbourne
and the Science Gallery, we held

                                                                                                                                                                             $6
                                                                                          ‘Snowdome                                                                          We committed over
 two inspirational Q&A sessions,
                                                                                        Occasional Coarse
sharing insights into researcher’s                                                       Language Too’
    motivation, cutting-edge
     genomics research and

                                                       $1.5
                                                           We secured almost
     personalised medicine
   advancements, see page 15

                                                                                                                                                                                million
                                                                                                                                         Warwick Sherman and his crew     to 3 new research projects
                                                                                                                                           set sail aboard ‘Snowdome           to advance blood
    Above centre                                              million                                                                    Occasional Coarse Language
                                                                                                                                          Too’ in the Sydney to Hobart
                                                                                                                                                                                cancer research
    Image courtesy of Epworth
                                                        in matched funding with the                                                         race raising funds and our
                                                          majority directed to the                                                        profile with numerous press
    6
                                                              Wilson Centre                                                                   articles, see page 24
Annual Review 2017 with 2016 - 17 Financial Highlights
$21
                                                                                Aligned with and facilitated                             Secured over
                                                                               the establishment of Maddie
                                                                                Riewoldt’s Vision, a charity

2010
                                                                                that has already raised $2.1
                                                                                  million towards funding
                                                                               research into a cure for bone
                                                                                marrow failure syndromes
Achievements Since                                                                                                                       million
                                                                                                                              (received or committed) in funding
                                                                                                                                  of which over 85% has been
                                                                                                                                assigned to innovative research
                                                                                                                                   for finding new treatments

                                                                                                                                                                     Won the inaugural
                                                                                                                                                                     State and National
                                                                                                                                                                   Telstra Business Award
                                                                                                                                                                   – Charity Division 2016
                                                                                                                                                                    in collaboration with
                                                                                                                                                                       Maddie’s Vision

     15%                                                                                                                            27
          Maintained a less than                                                                                                         Extended

                                     320
                                               Assisted

          expense base (8% for                                                                                               research grants representing over
           Snowdome specific           Australian blood cancer                                                               $16.5 million to fund 40 multi-year
          activities in 2016 - 17)   patients gain access to early                                                             Australian research positions
                                          phase clinical trials

                                                                                         333
                                                                                                    Enabled

                                                                                                                                                 $3.5
                                                                                                                                                             Leveraged

                                                    Contributed

                                                   17
                                                  funding to enable
                                                                                        Australian blood cancer patients
                                                                                       to participate in biomarker studies
Above centre                                                                            (biological marker testing assists
Image courtesy of Epworth
                                                                                          with patient identification for
Below left
Image taken at Peter                                                                   clinical trials and new treatments)                                 million
MacCallum Cancer Centre
                                                                                                                                                   in ‘matched’ funds by working
                                           clinical trials of new treatments                                                                      collaboratively with government
8                                                to commence as well                                                                                 and philanthropic partners
                                                  as 96 publications
Annual Review 2017 with 2016 - 17 Financial Highlights
Snowdome Funded Research Projects                                                                                         Image taken at Peter MacCallum Cancer Centre

Snowdome’s focus on                   Since 2010, Snowdome Foundation             Circulating Tumour DNA (ctDNA) –
                                      has extended 27 grants representing         background phase & Year 1: Epworth
multi-year funding has                over $16.5 million to fund 40 multi-        Research Foundation and Peter
ensured research trials,              year Australian researcher positions.       MacCallum Cancer Centre/Victorian
biomarker studies and                 Over 85% of Snowdome’s available            Comprehensive Cancer Centre
                                      funds have been invested in cutting-        2017 - 18 (co-funded)
projects have run to                  edge research. Snowdome’s focus
completion and are                    on multi-year funding has ensured           Analysis of cell-free tumour DNA
supporting Australian                 research trials, biomarker studies and      to allow for more comprehensive
                                      projects have run to completion and         and sensitive assessment of the
blood cancer patients.                are supporting Australian blood             mutations present in patients with
                                      cancer patients.                            B-cell malignancies (lymphoma and
                                                                                  myeloma). Also to be used to perform
                                      Snowdome Foundation grants include:
                                                                                  translational research. Multi-year
                                      Christine and Bruce Wilson Centre           funding of five research positions
                                      for Lymphoma Genomics: Peter                including:
                                      MacCallum Cancer Centre 2017 - 20
                 Over                                                             •   Laboratory Technician

     85%
                                      To develop a centre of research
                                      excellence using genomics to                •   Two Tissue Coordinators
                                      improve diagnosis, prognosis and            •   Molecular Haematopathologist
                                      fast-track personalised treatments for
                                      patients with lymphoma and related          •   Molecular Fellow
     of Snowdome’s available funds    malignancies. Multi-year funding of         •   Consumables testing costs
     have been invested in cutting-   nine research positions including:
            edge research
                                      •   Medical Director                        Grade 1 Medical Scientist for
                                                                                  Molecular Haematology: Peter
                                      •   Project Manager/Tissue                  MacCallum Cancer Centre 2017 - 18
                                          Coordinator                             To initiate and accelerate next-
                                      •   Clinical Bioinformatician               generation epigenetic blood cancer
                                                                                  clinical trials.
                                      •   Molecular Fellow
                                      •   Two Laboratory Technicians              Victorian Comprehensive Cancer
                                      •   Supervising Scientist                   Centre Trial Coordinator: Peter
                                                                                  MacCallum Cancer Centre 2016 - 18
                                      •   Software Engineer
                                                                                  To fast-track blood cancer trials and
                                      •   Data Manager                            accrue patients to these innovative
                                                                                  clinical trials.
                                      •   Consumable testing costs
                                                                                  T-cell lymphoma clinical research:
                                      Clonal Haematopoiesis Research
                                                                                  Peter MacCallum Cancer Centre
                                      & Fellowship: The University of
                                                                                  2016 - 19
                                      Melbourne 2017 - 19 (co-funded)
                                                                                  To develop a biomarker for T-cell
                                      To identify critical genetic factors
                                                                                  lymphoma patients undergoing
                                      (known as clonal haematopoiesis) that
                                                                                  treatments with epigenetic agent
                                      will contribute to greater predictability
                                                                                  romidepsin.
                                      of a bone marrow transplant being
                                      successful. Extension of the
                                      Klempfner Fellowship.                       Vision Super – Snowdome
                                                                                  Foundation Fellowship: The
                                                                                  University of Melbourne 2016 - 18
                                                                                  To develop new molecular profiling
                                                                                  of tumour samples for blood
                                                                                  cancer patients.

10                                                                                                                                                                       Snowdome Foundation – Annual Review 2017   11
Annual Review 2017 with 2016 - 17 Financial Highlights
Snowdome Funded Research Projects

Centre of Research Excellence in              tiered approach to personalised                Clinical Trial Research Nurse: Royal
Myeloma at Victorian Comprehensive            molecular profiling.                           Melbourne Hospital 2013 - 16
Cancer Centre: The University of                                                             To fast-track epigenetic blood cancer
Melbourne 2014 - 19                           George and Yolanda Klempfner                   trials and accrue patients to these
To develop a centre of research               Fellowship: The University of                  innovative clinical trials.
excellence using genomics to fast-            Melbourne 2015 - 17
track treatments for patients with            To coordinate a ‘world-first’ clinical trial   Clinical Trial Research Nurse: Peter
myeloma and related malignancies.             in BET inhibitors.                             MacCallum Cancer Centre 2012 - 13
                                                                                             (directed)
•    Julie Borschmann Fellowship:
     The University of Melbourne              Eva & Les Erdi-Snowdome Fellowship             To fast-track epigenetic blood cancer
     (directed funding)                       in New Haematological Malignancies:            trials and accrue patients to these
                                              The University of Melbourne 2014 - 17          innovative clinical trials.
•    Comprehensive clinical and               (co-funded)
     tumour database                          To investigate a new drug class and            Victorian Epigenetics Group Clinical
•    Bioinfomatics project and                develop a ‘world-first’ clinical trial to      Fellow: The Alfred Hospital 2012 - 13
     related costs                            monitor its effect on the immune               (Part funded to 66%)
                                              system and help predict blood cancer           To develop and accrue patients to
•    Morris Family Fellowship
                                              patients that will benefit most.               early phase epigenetic clinical trials
•    Two Data Managers/Nurses                                                                for leukaemia patients.
                                              Alfred Research Scientist 2015 - 16
Gandel Philanthropy – Snowdome                (co-funded)                                    Peter MacCallum Cancer Centre
Foundation Innovation Fellowship:             To validate identified biomarkers which        Clinical Fellowship 2011
Walter & Eliza Hall Institute 2016 - 18       will lead to establishing clinical trials.     To develop and accrue patients to
To develop and use biomarkers to              Also, to support research on circulating       early phase epigenetic clinical trials
optimise early phase lymphoma                 tumour DNA.                                    for blood cancer patients.
clinical trials using a ‘world-first’ class
of anti-cancer drugs.                         Peter MacCallum Cancer Centre
                                              Clinical Fellowship 2015 - 17
Aza Biomarker in MDS Research                 (co-funded)
Assistant, consumables & analysis:            To develop and accrue patients to
Peter MacCallum Cancer Centre                 novel epigenetic clinical trials for
2015 - 16                                     blood cancer patients.
To research if circulating tumour DNA
(ctDNA) can be used as novel strategy         Alfred Research Scientist 2014
to monitor disease burden in the              To identify early biomarkers and
myelodysplastic syndromes (MDS).              genetic signatures associated with
                                              epigenetic treatments.
Phase 1 study of MicroLEN in AML
and MDS: Royal Melbourne Hospital             Peter MacCallum Cancer Centre
2015 - 17                                     Clinical Fellow 2013 - 14
To develop a clinical trial to reduce the     To develop and accrue patients to
rate of AML relapse after allogeneic          early phase epigenetic clinical trials for
transplantation whilst avoiding the risk      blood cancer patients.
of Graft versus Host Disease.
                                                                                             Image taken at Cartherics Lab (MHTP)
                                              Victorian Epigenetics Group
Molecular Profiling of MDS Grade 2            Management Team 2012 - 14
Scientist, consumables & analysis:
The University of Melbourne 2015              To provide collaborative support for
                                              Victorian Epigenetic Group (VEG)
To develop a clinically applicable            clinical trials and seek ongoing funding
molecular predictive index of response        for VEG.
to azacitidine in MDS through a three-                                                                                                Melissa Jones
                                                                                                                                      Volunteer

12                                                                                                                                                    Snowdome Foundation – Annual Review 2017   13
Annual Review 2017 with 2016 - 17 Financial Highlights
Effecters of Change for Diversity                                                                                                     Donor Events                                                                         Snowdome funded researchers sharing their
                                                                                                                                                                                                                           passion for research at Blood: Attract + Repel

The Snowdome Foundation       Diversity and gender equity in the          that the under representation of
                              boardroom and in the broader                women in medical research is a loss
has a strong, inclusive       work place is important. To avoid           of talent and opportunity. To borrow
culture and recognises the    ‘groupthink’ it is essential to bring       from Prof Iris Bohnet, expert in gender
importance of diversity and   together people with different              equity at the Harvard Kennedy School,
                              backgrounds and perspectives along          the ‘leaky pipeline’ persists.
gender equity. Snowdome       with diverse experiences and skills.
has an all female executive   This contributes to a more inclusive        Snowdome & Maddie’s Vision
                              and better performing workplace as          fund numerous research fellows
led by CEO, Miriam Dexter                                                 and we are proud to highlight that
                              well as better performing boards
and a skill based board       that tend to make better decisions          two recipients are female medical
comprising four female        as a result.                                researchers, Dr Mary Ann Anderson,
                                                                          the Gandel Philanthropy-Snowdome
board members (29%            There is still a big gap in diversity and   Foundation Innovation Fellow at the
female representation).       gender equity. This gap exists despite      Walter and Eliza Hall Institute (WEHI)
                              public discussion, initiatives1 and         and Dr Carrie Van Der Weyden, Peter
                              targets2 set to improve the inequality.     MacCallum Cancer Centre Clinical
                                                                          Fellow. Also, Maddie’s Vision is
                              •   The percentage of women on              providing funding for a project headed
                                  ASX200 boards is 26.7%3                 by Dr Lynette Chee at the Royal
                              •   39.1% representation of women on        Melbourne Hospital. Furthermore,
                                  government boards4                      Snowdome funds numerous research
                                                                          roles that have been filled by women
                              •   Only nine female CEOs in the            including research scientists,
                                  ASX 2005                                clinical trial nurses, research project
                              •   Women are under represented in          managers, tissue coordinators and
                                  senior positions in medical research    data managers.
                                  and academia. Furthermore, they
                                                                          Snowdome and Maddie’s Vision plan
                                  are less likely to be a recipient of
                                  research funding or to be selected
                                                                          to raise funds to launch a fellowship                       The philanthropic dollar                The events highlighted the passion           To hear directly from our inspiring
                                                                          supporting female researchers in                                                                    and commitment the Snowdome                  Snowdome researchers visit our
     Women representation                                                                                                             underpins ‘Blue Sky

39.1%
                                  as a lead investigator1
                                                                          science with a focus on haematology.                                                                researchers have to making a                 YouTube channel (Snowdome
                              The Snowdome Foundation has a               The fellowship aims to bridge the                           Research’.                              difference to the lives of people with       Foundation Network). All panellists and
                              strong, inclusive culture and recognises    gender gap and enable the applicant                                                                 blood cancer. They are driven to find        our host, Professor Miles Prince have
                              the importance of diversity and gender      to continue a strong research                                                                       better outcomes through improved             been recorded in a series of interviews
                                                                                                                                      Blood: Attract + Repel                  therapies and personalised medicine,         called ‘One Cool Minute.’ They are
                              equity. Snowdome has an all female          career, ultimately paving the way for
     on government boards4    executive led by CEO, Miriam Dexter         promotion into a leadership position.                       Passionate Snowdome supporters          matching aspects of a patient’s cancer       inspiring, educational and entertaining.
                              and a skill based board comprising four     The scholarship recipient will also                         were invited to two unique events       with the best treatment. This involves
                              female board members (29% female            benefit from a mentor program.                              combining science and art at The        everyone working together from the
                              representation). Maddie Riewoldt’s          Details of this exciting fellowship will                    University of Melbourne Science         researcher to the clinician treating
                              Vision also has an all female executive     be announced in 2018.                                       Gallery. Ahead of viewing the           the patient.
                              led by CEO, Nicky Long coupled                                                                          interactive exhibition guests were      In addressing the importance of
                              with a female chair of the board,                                                                       given the opportunity to hear from
                                                                          1. In December 2017, the National Health and Medical                                                philanthropic research funds,
                              Jennifer Trethewey.                                                                                     Snowdome researchers and our host,
                                                                          Research Council (NHMRC) announced a boost in                                                       Prof Mark Dawson emphasised that
                                                                          funding for Australia’s most talented female researchers.   Professor Miles Prince on how they      the philanthropic dollar underpins
                              There is a strong commitment by             An initiative to close the gap in funding rates between
                                                                                                                                      are advancing the fight against
                              Snowdome and Maddie’s Vision to be
                                                                          male and female researchers and to retain female talent                                             what he terms as ‘Blue Sky Research’.
                                                                          in the health and medical research sector.                  blood cancers.                          Government funded research tends
                              leaders and effecters of change for         2. AICD called for a 30% gender diversity target on S&P/
                              diversity and gender equity.                ASX 200 company boards. 2016 ended with 2% increase
                                                                                                                                      The panel of Snowdome funded            to focus on addressing incremental
                                                                          in female board memberships to 21.7%
                                                                          3. (AICD Gender Diversity Report 2018)                      researchers addressed questions such    questions which makes it challenging
                              Snowdome together with Maddie’s             4. (AICD Gender Diversity Report 2017)
                                                                                                                                      as, what drives them as researchers,    to pursue truly innovative ideas.
                                                                          5. (Consultant Conrad Liveris gathered the data on
                              Vision are passionate about supporting      CEOs and chairs at Australia’s largest 200 companies for    whether genomics can predict cancer     Snowdome research is critical because
                              female medical researchers with a           the third year running, and released it to coincide with
                                                                                                                                      and importantly what do philanthropic   it is where innovative advances will be
                                                                          International Women’s Day – Article : http://www.abc.net.
                              focus on haematology, blood cancers         au/news/2017-03-08/fewer-women-ceos-than-men-               funds bring to research.                made that change the natural history
                              and bone marrow failure. We recognise       named-john/8327938                                                                                  of the disease.

14                                                                                                                                                                                                                      Snowdome Foundation – Annual Review 2017            15
Annual Review 2017 with 2016 - 17 Financial Highlights
Christine and Bruce Wilson Centre                                                                                              Andrew Wilson, Pennie Callaghan, Bruce Wilson,
                                                                                                                               Christine Wilson and James Wilson

for Lymphoma Genomics

                                       An incredibly generous donation from       In addition to this generous donation,
                                       Christine and Bruce Wilson of $5.5         both Peter MacCallum Cancer Centre
     Contributions/Impact
                                       million over 4 years will establish a      and The University of Melbourne
                                       state of the art centre for lymphoma       will commit additional resources to
                                       genomic testing at the Peter               support broadening the scope of the

                 $5.5                  MacCallum Cancer Centre.                   Christine and Bruce Wilson Centre for
                                                                                  Lymphoma Genomics. Researchers
                 million               Genomic testing involves taking a
                                       patient’s sample to look for critical
                                                                                  plan to extend the concept of this
                                                                                  complex genetic analysis to myeloid
                  donation
                                       gene mutations that are known to           malignancies such as acute myeloid
                                       play a role in their particular blood      leukaemia. The Snowdome Foundation
                                       cancer. The results of the test can then   aims to raise $10 million for genomic
                                       provide a more accurate diagnosis,         research at the Wilson Centre for
                 1,000
                  lymphoma
                                       prognosis and treatment journey
                                       such as a clinical trial to access
                                                                                  Lymphoma Genomics.

                                       drugs that work against specific gene      Associate Professor David Westerman,
                  patients each year
                                       mutations. Up until now a limited          who will lead the research project,
                  will be benefited
                  by genomic testing   number of patients had access to this      says that advancement of genomics
                                       testing. The donation will allow over      will eventually eliminate the need for
                                       1,000 lymphoma patients every year         chemotherapy in treating cancer.
                                       throughout Australia, New Zealand and      “With this partnership between
                  Snowdome aims        Asia Pacific to receive the benefits of    research, clinical, university and
                  to raise             genomic testing.                           philanthropy, we are now able to fast-

                 $10                   The Wilson Family pledged the $5.5
                                                                                  track genetic testing to more patients.
                                                                                  Genomics and personalised medicine
                 million               million towards the research program
                                       as they were struck by how much
                                                                                  is what will aid targeted, less toxic
                                                                                  cancer treatments.”
                 for genomic           genetic testing can save lives, or
                 research at the
                 Wilson Centre         improve the quality of life for patients   Snowdome Foundation would like to
                 for Lymphoma          with lymphoma. Christine had been a        express their sincerest thanks for this
                 Genomics              lymphoma patient at Peter MacCallum        very generous donation.
                                       Cancer Centre for 20 years and
                                       wanted patients to experience the
                                       benefits of this cutting-edge testing.
                                                                                  The donation will help
                                       The Wilson family were personally          Snowdome achieve its
                                       moved to act after seeing so many          mission to accelerate next-
                                       blood cancer patients not respond
                                       to conventional treatment or relapse
                                                                                  generation treatments for
                                       sooner than expected.                      Australian blood cancer
                                       “Acts of huge generosity such as
                                                                                  patients to help them live
                                       setting up the Wilson Centre are what      longer, better lives.
                                       drives a world-first” said Professor
                                       Miles Prince, Snowdome Co-Founder
                                       and Director.

                                       The Wilson Family hope that their
                                       support will make the centre’s
                                       ground-breaking work accessible to all
                                       Australians affected by blood cancer.
                                       They are optimistic that their generous
                                       donation will inspire others to give
                                       towards making this a standard of
                                       care for everyone in the future.

16                                                                                                                          Snowdome Foundation – Annual Review 2017       17
Annual Review 2017 with 2016 - 17 Financial Highlights
Eve’s Patient Perspective                                                                                                    Translating Research into Clinical Practice
Real Hope for Lymphoma Patients                                                                                              Circulating Tumour DNA

                                I was diagnosed with Hodgkins                 This is why I am thrilled that there are
                                Lymphoma two weeks before my                  generous philanthropic people like
                                36th birthday and yes I was in shock…         Christine and Bruce Wilson investing in
                                In some ways I still am. Everything           innovative research in this area, asking
                                you are told when you hear the word           the question, “Why?”
                                cancer is true. You only retain 10% of
                                the information that is being thrown at       Research is essential for disease
                                you at a rapid pace. After six months         prevention and treatment.
                                of treatment at Prince of Wales Public        If researchers have the ability to
                                Hospital in Sydney – which included           discover that you may have a genetic
                                chemotherapy and radiotherapy – I             predisposition to lymphoma, there
                                am pleased to say that I have been            maybe lifestyle factors you can adjust
                                clear for 7 years. I live with minimal side   to minimise your risk. What I consider
                                effects and try not to complain!              even more exciting is targeted therapy
                                                                              for your cancer. Patients might be able
                                However, what I do think about most           to gain access to what is now referred
                                days (and I am not sure it will ever go       to as ‘personalised medicine’ –
                                away) is why I got blood cancer. I will       a targeted treatment that will just kill off
Patients might be able to       be the first to admit that I am no elite      the bad stuff and not interfere with the
                                athlete nor do I have a vegan lifestyle       good stuff. This is a huge comfort as
gain access to what is now
                                sipping tumeric almond milk lattes            sadly many blood cancer patients do
referred to as ‘personalised    (and no offence if this is you). However,     experience relapse.
medicine’ – a targeted          on the other side of the coin, I was not
                                living an unhealthy life.                     There are numerous types of
treatment that will just kill                                                 lymphomas and sub-types. It is a
                                                                                                                             In 2018, our key fundraising                  The potential for clinicians to utilise           bicycle relays, birthday celebrations
off the bad stuff and not       As far as I’m aware there was no              common cancer. I hope that one day,                                                          ctDNA for diagnosis and monitoring                as well as personal donations. In 2018,
                                family history of cancer. I am the            we know why one person over another            initiative will be to seek
interfere with the good                                                                                                                                                    disease progression is vast, however              our key fundraising initiative will be
                                granddaughter of holocaust survivors          is more likely to get lymphoma, so             funding for Year 2 and Year                   research to validate results of ctDNA             to seek funding for Year 2 and Year
stuff. This is a huge comfort   and often wondered if this was                that they can take steps in their life to
                                                                                                                             3 of the ctDNA research                       against biopsies are essential to take            3 with $295,000 needed each year.
as sadly many blood cancer      connected, however this is most               minimise this risk. I also look forward to                                                   this discovery from the research lab to           All donations are ‘matched’ by the
                                probably completely irrelevant. I have        the time when patients with lymphoma           with $295,000 needed
patients do experience                                                                                                                                                     the clinic.                                       Epworth Medical Foundation. We look
                                no family predisposition to cancer            have treatment that is effective with no       each year. All donations are                                                                    forward to keeping you abreast of this
relapse.                        and was blissfully unaware of genetic         side effects. Who knows, maybe even                                                          The Snowdome Foundation and the
                                risk factors.                                 in the future with genomics testing,           ‘matched’ by the Epworth                      Epworth Medical Foundation are
                                                                                                                                                                                                                             innovative research for Australian
                                                                                                                                                                                                                             blood cancer patients.
                                                                              we might be able to predict and then           Medical Foundation.                           partnering to fund the advancement of
                                During treatment I did meet with              prevent lymphoma. I do not think this is                                                     ctDNA also known as ‘liquid biopsies’
                                a genetic pathologist to try to               wishful thinking. Look how far science,        Currently diagnosis and assessment            for clinical use. It is a true collaboration      Image taken at Peter MacCallum Cancer Centre
                                understand the genetic factors                medicine and research has come.                of blood cancer progression relies on         as it leverages the expertise from
                                that may have impacted me to be                                                              an invasive biopsy of the lymph node or       Snowdome funded initiatives:
                                diagnosed with Hodgkins Lymphoma.             We need to make a point of fostering,          bone marrow, depending on the cancer          Christine and Bruce Wilson Centre
                                I understand that in 2010 there was           encouraging and thanking those who             type. The biopsy is then analysed to          for Lymphoma Genomics and Centre
                                not a lot of research into the genetics       are able and willing to give back.             determine the genetic make-up of              of Research Excellence-Myeloma.
                                of Hodgkins Lymphoma. Like lots of            Thank you Christine and Bruce Wilson.          the tumour that ultimately influences         This collaboration aims to develop,
                                lymphoma sufferers, I was and still am        I do not need to know you to say that          the treatment path. Unfortunately, the        optimise and validate ctDNA-based                       Key fundraising initiate is to seek
                                searching for a reason why.                   you are truly amazing.                         procedure is painful and the genomic          assays (including complementary                          funding for year 2 and 3 of the
                                                                                                                             analysis is limited to the biopsied area.     genomic techniques) to be used in the                         ctDNA research with
                                Genetics involves the scientific studies

                                                                                                                                                                                                                                $295,000
                                                                                                                             However, new research indicates that          detection and monitoring of ctDNA
                                of genes and their effects, ‘genetics’                                                       DNA from the tumour can be found
                                and ‘genomics’ are definitely buzz                                                                                                         in B-cell malignancies (including
                                                                                                                             circulating in blood. Analysing circulating   lymphoma and myeloma) to a
                                words. You hear lots about breast                                                            tumour DNA (ctDNA) may provide a
                                cancer and women with the genetic                                                                                                          diagnostic standard.                                           needed each year
                                                                                                                             broader perspective of the tumour
                                marker of the BRCA gene and the well-         Eve Propper                                    that is not limited to the biopsied area.     Throughout 2017, we thanked our
                                known ‘Angelina Jolie effect.’ However,                                                      It is hoped that a simple blood test to       generous Snowdome donors that
                                there was not a lot that I was aware of                                                      detect ctDNA can one day replace an           funded the first year of this three-year
                                about lymphoma.                                                                              invasive biopsy.                              project. These donors raised funds in

18                                                                                                                                                                                                                        Snowdome Foundation – Annual Review 2017       19
A Vision of Improving Personalised
Cancer Treatment

Dr Piers Blombery, a             Three years ago, Vision Super looked        increase his susceptibility to skin
                                 at their insurance claims data –            cancer, but he says the medication
clinical and laboratory          25% of their insurance claims were          has been great. “Really the worst
haematologist and the            cancer-related and sadly 46% of their       thing is that I wake up each day with
medical lead of the              members’ deaths were also due to            curlier hair!”
                                 cancer. Vision Super decided they
Molecular Haematology            needed to do more to help prevent           “Going on the targeted therapy has
laboratory at the Peter          the devastation cancer creates for          allowed me to live the life I want to live,
                                                                             it has given me freedom.”
MacCallum Cancer Centre,         their members, families, and the
                                 wider community.
stated that the generous                                                     Vision Super-Snowdome Foundation
                                                                             Fellow, Dr Piers Blombery, a clinical
support provided by              Over the last three years Vision Super
                                                                             and laboratory haematologist and
                                 has supported a genomics fellowship
Vision Super has made a          through the Snowdome Foundation             the medical lead of the Molecular
remarkable difference in         and as a result has made a significant      Haematology laboratory at the Peter
                                 difference to Australian blood              MacCallum Cancer Centre, stated that
increasing access to blood                                                   the generous support provided by
                                 cancer patients.
cancer genetic testing                                                       Vision Super has made a remarkable
for patients.                    Since 2014, Snowdome has funded             difference in increasing access
                                 cutting-edge genomics research and          to blood cancer genetic testing
                                 supported incredible advances in the        for patients.
                                 treatment of cancer through genomics
                                 testing. Patients can undergo genetic       “The partnership between Vision
                                 testing to help identify mutations that     Super and Snowdome has allowed
                                 guide treatment, identify targeted          me to create a team of scientists with
                                 therapies as well as identifying patients   the expertise to perform the genomic
                                 suitable for clinical trials.               testing like Paul had,” explained
                                                                             Dr Blombery. “Our team analyses
                                 The collaborative partnership between       genomic data in blood cancer,
              Sadly              Snowdome and Vision Super has had           develops new assays to detect these

     46%
                                 a positive impact on the lives of many      mutations and helps guide patients
                                 Australian blood cancer patients,           to new specific and personalised
                                 including Paul Omond.                       medications.” These highly specialised
                                                                             tests are now performed through the
                                 Paul is a 36-year-old from Scoresby,        Molecular Haematology Laboratory
     of Vision Super members’
                                 who in 2012, was diagnosed with Hairy       at Peter Mac for hundreds of patients
     deaths were due to cancer   Cell Leukaemia, a rare type of blood        a month throughout Australia, South
                                 cancer. Conventional therapy proved         East Asia, and New Zealand.
                                 to be the wrong path for Paul and the
                                 side effects resulted in a large portion    For the second year, Vision Super
                                 of his bowel being removed. Paul’s          employees also participated in the
                                 leukaemia then relapsed much sooner         Murray to Moyne charity bike ride.
                                 than expected. Genetic testing of           The group of cyclists, support crew
                                 Paul’s leukaemia cells found that they      and donors raised almost $35,000,
                                 contained a BRAF mutation, which            making an accumulated total of close
                                 allowed him to go onto a novel targeted     to $50,000.
                                 therapy specific to that mutation.
                                 Paul’s outstanding response to specific     Vision Super’s partnership with
                                 therapy has greatly improved his            Snowdome is about supporting and
                                 quality of life and his cancer is now       caring for individuals like Paul, who are
                                 controlled with minimal side effects.       the individuals behind the insurance
                                                                             statistics. Vision Super truly is making
                                 Instead of chemo, Paul takes four           a difference for Australians with
                                 tablets a day. Paul states that he has      blood cancer.                                 Dr Piers Blombery
                                 to be careful, because the tablets                                                        Vision Super – Snowdome Foundation Fellow
                                                                                                                           Researcher and Clinician

20                                                                                                                                                                     Snowdome Foundation – Annual Review 2017   21
Researcher Profile                                                                                                               The ‘Bloody Good Dinner’
Dr Chan Cheah                                                                                                                    A Bloody Good Success
MBBS (Hons) DMedSc FRACP FRCPA

                                           to really make magic happen.                highlight the gains that can be           The Snowdome Foundation and                   services to make this event such a
                                           He studied Medicine at the University        achieved from a national and             Maddie Riewoldt’s Vision joined forces        success. Snowdome would also like
                                           of Western Australia and completed          international clinical trial network.     in 2017 to create the ‘Bloody Good            to acknowledge our five major event
                                           a Translational Research Fellowship         The WA Lymphoma Centre of                 Dinner’. The night captivated guests          partners who helped to make the
                                           at Peter MacCallum Cancer Centre            Excellence aims to achieve this.          from the minute they entered the              event truly memorable: Blakes Feast,
                                           (Melbourne, Australia) and an                                                         blue and red themed historic Meat             Captain’s Choice, Dann Event Hire,
                                           Advanced Lymphoma Fellowship                Dr Cheah was fortunate in his career      Market Pavilion in Melbourne. It really       Fred’s of Merivale and Town Square.
                                           at MD Anderson Cancer Center                to have some incredible mentors           was a night to remember showcasing            See page 43 for our full list of pro-bono
                                           (Houston, Texas, USA). He currently         that helped guide and shape his           French Champagne and some of                  event partners.
                                           works at Sir Charles Gardiner Hospital      research career. He is passionate         Australia’s best Gin, Vodka, Whisky and
                                           and Hollywood Private Hospital              about fostering the same programme        Wines. Fred’s of Merivale Chef, Danielle      The ‘Bloody Good Dinner’ will be held
                                           in Perth.                                   with the team of ten haematologists       Alvarez, created a delicious seasonal         again on Wednesday, May 23, 2018
                                                                                       currently working at his site. Dr Cheah   menu that brought out the incredible          at the Meat Market. We look forward
                                           Chan has just been awarded the 2017         believes in the critical importance       flavours in O’Connors beef and the            to another successful evening in
                                           WA Early Career Cancer Researcher of        of encouraging young specialists to       unforgettable seafood station.                partnership with Maddie Riewoldt’s             Snowdome Foundation and Maddie Riewoldt’s
                                           the year.                                   undertake specific research training                                                    Vision.                                        Vision Board members
                                                                                       to ensure continued progress in the       Throughout the evening guests were
                                           Dr Cheah has developed connections          treatment of these cancers.               entertained by MC Hamish McLachlan
“To get anything done you                  through his career working in WA,                                                     and world-class blood researchers,
                                           Melbourne and the USA. This                 Dr Cheah believes it’s an incredibly      Professor Mark Dawson and Professor              How can clonal
need dreamers, dollars                     enables him to tap into global clinical     exciting time to be in blood cancer       Miles Prince AM.                                 haematopoiesis increase
and doers. Dreaming is the                 expertise, new drugs, trial protocols       research and that Snowdome is a                                                            the success of bone
                                           and importantly allows data for rare        wonderful enabler. Although great         The evening allowed the audience to
easy part …”                                                                                                                                                                      marrow transplants?                              The ‘Bloody Good Dinner’ exceeded
                                           diseases to be pooled.                      progress has been made, many              learn more about blood cancer and the                                                                 all expectations raising over
— Ros Harvey Sydney Morning
                                                                                                                                                                                                                                   $400,000
                                                                                       unanswered questions remain.              importance of blood cancer research.             Put simply clonal
Herald 20/11/17                            Impressively, he is collaborating on        Research is expensive and can be          Hamish McLachlan led a question and              haematopoiesis (CH) is a term
                                           a world-first Phase I clinical trial in     greatly accelerated by the generosity     answer session with Miles Prince that            used for the process of forming
                                           patients with follicular lymphoma at        of donors. Donations go directly          covered some personal sharing as well            a sub-population of genetically
Dr Chan Cheah dreams about a world         these three sites. The trial is examining   towards sponsoring clinical trial         as easy to understand explanations               distinct blood cells. CH is already
where patients are not dying of blood      the combination of three non-               nurses, research fellows and essential    about blood cancer.                              known to predispose patients to
cancers and believes that we are on        chemotherapy agents. Samples will           personnel that make trials possible.                                                       blood cancers and bone marrow
the cusp of some dramatic inroads to       be analysed to assist in determining        This can immediately translate to new     Mark Dawson shared his vision to
                                                                                                                                                                                  failure syndromes. The Peter
make this a reality. With support from     why patients respond the way they do        therapies and longer, better lives for    increase bone marrow transplant
                                                                                                                                                                                  MacCallum Cancer Centre will
the Snowdome Foundation, Dr Cheah          to treatment. This data will be used to     patients with blood cancers.              success. To achieve this, important
                                                                                                                                                                                  undertake a comprehensive
is establishing a Lymphoma Centre          help shape future recommendations           If there was ever a time to donate to     research needs to be conducted to
                                                                                                                                                                                  analysis of bone marrow
of Excellence in Western Australia         for follicular lymphoma treatment.          blood cancer research, it is now.         identify critical genetic factors that
                                                                                                                                                                                  transplant patients and donors
(WA). Currently WA is involved in          This study builds on earlier ground-        It is researchers like Dr Cheah that      contribute to greater predictability of
                                                                                                                                                                                  for CH. Identifying these critical
fewer investigator-initiated trials than   breaking research conducted by Dr           are ‘making hope real’.                   a successful bone marrow transplant.
                                                                                                                                                                                  genetic factors may contribute
other Australian States. Unfortunately,    Cheah while at MD Anderson Cancer                                                     Not only will the research save more
                                                                                                                                                                                  to greater predictability of a
this can mean fewer new treatment          Centre where he reported on the                                                       lives but it will also ensure that precious
                                                                                                                                                                                  bone marrow transplant being
options for WA patients or interstate      unexpected and severe toxicity of                                                     bone marrow donations are utilised
                                                                                                                                                                                  successful. This data will then
travel to participate in trials. The WA    combining three biological agents                                                     in the right patients increasing the
                                                                                                                                                                                  be used to perform a detailed
Lymphoma Centre of Excellence              (Cheah CY et al. Blood. 2015 May 21;                                                  chance of a successful transplant.
                                                                                                                                                                                  analysis to uncover how CH
will enable Dr Cheah and his team to       125(21): 3357–3359).                                                                                                                   evolves to blood cancers and
focus on helping lymphoma patients                                                                                               The ‘Bloody Good Dinner’ exceeded
                                                                                                                                 all expectations raising over $400,000.          bone marrow failure.
at their site receive access to            Furthermore, Western Australian
next-generation treatments.                Hodgkins Lymphoma patients                                                            Funds will be used to support a
                                           considered unsuitable for                                                             world-first medical research project
Dr Cheah is a Haematologist and            chemotherapy will soon have the                                                       in clonal haematopoiesis. A generous
clinician-researcher internationally       opportunity to participate in a new                                                   donation by George and Yolanda
recognised for his expertise in            trial. The trial commences in late                                                    Klempfner will enable the continuation
lymphoma. He is committed to curing        2018 and is being led by the Julie                                                    of the fellowship position in this area
more patients with lymphoma and            Borschmann Fellow (Snowdome                                                           of research. Snowdome wishes to
believes it takes a team of dedicated      directed funding), Dr Michael                                                         thank all its pro-bono partners who
researchers with global connections        Dickinson. Such collaborations                                                        generously donated their time and

22                                                                                                                                                                                                                         Snowdome Foundation – Annual Review 2017    23
Fundraising Events

 Warwick Sherman and his                ‘Snowdome Occasional                          A Dazzling Event
 crew won the Corinthian                Coarse Language Too’ Set Sail                 Hosted by Bulgari
 class (all amateur crew) in            and Won!
                                                                                      At the end of 2017, Bulgari generously
 the 2017 Sydney to Hobart              When well–known Cruising Yacht Club           chose Snowdome as their local
                                        of Australia offshore racer, Warwick          charity of choice to raise awareness
 Yacht Race.                                                                          and funds for the Christine and
                                        Sherman’s lymphoma returned in
                                        2015, he was fortunate to participate in      Bruce Wilson Centre for Lymphoma
                                        a clinical trial with ibrutinib. In October   Genomics. The event that was held
                                        2016, after further chemotherapy              just before Christmas, provided guests
                                        and a stem cell transplant from his           with the opportunity to view, try on
                                        brother, Warwick was again given the          and purchase some extraordinarily
                                        all clear. Sherman is now in remission        beautiful Bulgari pieces. A percentage
                                        for the second time and believes it’s         of the proceeds from the evening went
                                        all about second chances – a second           directly to Snowdome raising $17,500.
                                        chance at life and a second chance            Snowdome Director and co-founder,
                                        at the Sydney to Hobart Yacht Race.           Rob Tandy, thanked Bulgari and
                                        In 2012, Warwick tackled the Sydney           highlighted the important research
                                        to Hobart Race when he was first              being conducted at the Christine and
                                        diagnosed with lymphoma. While                Bruce Wilson Centre for Lymphoma
                                        Warwick did incredibly well winning his       Genomics in personalising blood
                                        division on a handicap he felt he was         cancer treatment.
                                        still weak from the chemotherapy. So
                                        more determined than ever Warwick
                                        and his crew raised the Snowdome
     Raising critical funds             main sail in the 2017 Sydney to Hobart
      and awareness for                 Yacht Race to increase awareness
          Snowdome                      and raise critical funds for blood
                                        cancer. Snowdome Occasional
                                        Coarse Language Too did incredibly
                                        well winning the hotly contested
                                        Corinthian class (all amateur crew).
                                        Out of a fleet of 102 boats only one
                                        yacht smaller crossed the finished
                                        line ahead of them. Snowdome would
                                        like to congratulate Warwick and the
                                        crew for a fabulous race. Thank you for
                                        your generous support raising $12,340
                                        for blood cancer research and your
                                        inspiring story of determination.

$12,340
     raised for blood cancer research
     by Warwick Sherman and his crew

                                                                                                                               Snowdome Foundation – Annual Review 2017   25
24
Fundraising Events

                                           The FireFlies Antipodes Riding
     Contributions                         for those that Suffer
                                           The Fireflies riders know riding a bike
                                           for eight hours a day is a painful and
                     $17,500               demanding experience but is nothing
                                           compared to the physical, mental and
                     raised by BVLGARI
                                           emotional pain that cancer patients
                     Australia for the
                     Wilson Centre         and their families endure on a weekly
                                           basis. This is why they are committed
                                           to raising money to support
                                           cutting-edge medical research and
                                           treatments for Australians with
                                           blood cancer.
                     $28,000
                     raised by The Fire-   So in March 2017, 8 riders made a
                     Flies Antipodes       circumnavigation of Tasmania and
                     for Snowdome          rode over 1,000 km in the process to       ‘Wogs at Work’ for Snowdome
                                           raise funds for Snowdome. Snowdome         Nick Giannopoulos is well known in
                                           is grateful to The FireFlies Antipodes     Australia for his series of comedies
                                           for raising nearly $28,000, making an      focusing on non-anglosaxon migrants
                                           accumulated total of $57,000.
                     Donation              An outstanding result!
                                                                                      in Australia. In September 2017, Nick
                                                                                      toured his hit stage show ‘Wogs at
                     from Michela and
                     Adrian Fini to                                                   Work’ with Sooshi Mango and kindly
                     establish the WA      Generous Donation from                     chose Snowdome as the charity of
                     Lymphoma Centre
                                           Michela and Adrian Fini                    choice for the VIP opening night.
                     of Excellence
                                                                                      Nick is a passionate supporter of
                                           Western Australian Property                Professor Miles Prince and the work
                                           Developer Adrian Fini was recently         he is conducting to help Australian
                                           awarded the 2017 Pinnacle Awards’          blood cancer patients live a longer,
                                           Business Leader of the Year. Mr Fini       better life. Nick explained why he felt
                     $16,000               is tributed with changing the Perth        Snowdome was set apart from other
                     raised by ‘Wogs       cityscape and is best known for his        charities and asked guests to kindly
                     at Work’ for blood    redevelopment of the State Buildings       donate a blue note as they exited
                     cancer research
                                           on St Georges Terrace. Now Mr Fini         the theatre. The night was a great
                                           is contributing to the development         success not only raising awareness
                                           of a WA Lymphoma Centre of                 for Snowdome but also raising almost
                                           Excellence through the donation of         $16,000 for essential blood cancer
                                           his prize money. The donation to the       research. We thank Nick and Sooshi
                                           Snowdome Foundation will go directly       Mango for the laughs and for choosing
                                           to the establishment of the WA             Snowdome as their charity of choice.
                                           Lymphoma Centre of Excellence led
                                           by Dr Chan Cheah. Snowdome would
                                           like to thank and acknowledge Michela
                                           and Adrian Fini for their generous
                                           donation and personal efforts to
                                           advance this research to improve the
                                           lives of Western Australians living with
                                           blood cancer.

26                                                                                                                              Snowdome Foundation – Annual Review 2017   27
Maddie Riewoldt’s Vision
Highlights from Year in Review

                               Report from Chair                               Reflections from our CEO                     Thank you to the board, committees,        immunosuppressive treatments and
                                                                                                                            partners, sponsors, donors, volunteers     bone marrow transplantation can be
                               2017: what a year for Maddie Riewoldt’s         A highlight of 2017 was receiving a                                                                                                      Highlights for the Year
                                                                                                                            and all the supporters for what you give   can be associated with life-altering
                               Vision - it’s been a stand out for all of us!   text message in late December from           us and to me personally. Our research      side effects.
                                                                               Elissa Vanderland; “He’s done it,            already has great achievements but
                               Our unwavering commitment to our                                                                                                                                                                                    Audited funds raised
                                                                               he’s engrafted”. Immediately I was           our work is only just beginning and we     Approximately 160 young Australians                                         since inception (June
                               vision has taken us to a new level, with        overcome with emotion. Happiness                                                        are diagnosed with a BMF syndrome
                                                                                                                            look forward to continuing with you to                                                                                 2015 - June 2017)
                               another successful year of raising              at the good news for Elliot and relief                                                  each year. Many more will present with
                                                                                                                                                                                                                                                  $1.877
                                                                                                                            build our vision towards a cure.
                               significant funds. We are dedicated to          that his family finally had good news                                                   related bone marrow conditions such
                               ensuring these funds are channelled to          after a 300 day battle in hospital. Elliot   Big Hugs for a special year ahead,         as Acute Myeloid Leukamia (AML) and
                               meaningful scientific research projects
                               to ultimately find a cure for Bone Marrow
                                                                               is not cured but he has been given the                                                  Myelodysplastic syndrome (MDS) and                                         million
                                                                               best chance at health with his second                                                   rarer conditions such as congenital
                               Failure Syndrome (BMFS).                        Bone Marrow Transplant. I don’t need                                                    abnormalities of white cell and platelet
                                                                               to tell you how we all felt when his first                                              production. Sadly, more than half                                           Pro bono support
                               We could never have achieved this
                                                                               transplant failed.                                                                      of these patients will die from
                               without the ongoing energy and support
                                                                                                                                                                       their disease.                                                             $584,598
                               of so many people and organisations             Elliot is a mascot for me – a real fighter
On 24th February 2015,         from in and around the community.               and determined little man. He keeps                                                     The biology of BMF and the biology of
                               This includes the collaboration with            us focussed on ensuring that his long                                                   AML and MDS are closely linked and
26 year-old, Tasmanian         the Snowdome Foundation and the                                                                                                         in many (30%) of instances patients
                                                                               road of overwhelming treatments              Nicky Long                                                                                                             Expense ratio
born, Maddie Riewoldt
                                                                                                                                                                                                                                                   22%
                               invaluable support and partnership they         become shorter and that we continue                                                     initially diagnosed with BMF will evolve
tragically lost her five-      provide us.                                     our energetic passion towards                                                           into these related conditions over the
year fight against a type of   Three years ago, our organisation was
                                                                               alternative, less toxic and more known       Research Projects:                         course of months to years. The close
                                                                               treatment outcomes.                          The Cornerstone of Our                     relationship of these conditions is via
Bone Marrow Failure (BMF)      born from the loss of our gorgeous
                                                                                                                                                                       their shared root cause of abnormal
                               Maddie on 24 February 2015 and we               The Vanderlands are not alone and            Mission For a Cure                                                                                                     Grants committed
called Aplastic Anaemia.                                                                                                                                               bone marrow biology, which leads
In June 2015, the Riewoldt
                               strive every day to make her proud
                               and honour her desire to find a cure
                                                                               as emotionally challenging as it is to
                                                                               hear patient stories, it is a highlight
                                                                                                                            What is the Problem We
                                                                                                                            Are Trying to Solve?
                                                                                                                                                                       to the suppression of normal bone
                                                                                                                                                                       marrow productivity (bone marrow
                                                                                                                                                                                                                                                   $1.3
family established Maddie      for Bone Marrow Failure Syndrome. As
                               a long-time friend of Fiona and Joerg
                                                                               for me personally to connect with                                                       failure) and/or the emergence of                                            million*
                                                                               them. Quinn, Blake, Joel, Adrian,            “Bone marrow failure syndromes are
Riewoldt’s Vision. Maddie’s    Riewoldt, it is my commitment to them,                                                       not common conditions, but they are
                                                                                                                                                                       abnormal bone marrow stem cells                                             7 research projects
                                                                               Sam, Indyanna, Harley, Jane and                                                         with cancerous patterns of growth
Vision was established to      and Maddie, to continue our charge and          Luci – just to name a few. It was also a     devastating, long term and completely      (the hallmark of AML and MDS).
                               deliver what we set out to do.
raise funds to find a cure                                                     highlight to hear the happy news that        debilitating conditions associated with    Dissecting and understanding the                                            Total funds raised
                                                                               Jamie Wiedermann not only became             a high resource burden for patients,
through funding innovative     All of our supporters, sponsors and
                                                                               pregnant but had her healthy little          families and the community.
                                                                                                                                                                       bone marrow biology that drives                                             since inception
                               ambassadors have played their part in                                                                                                   BMF syndromes is the key to finding                                         (June 2015 -
medical research.                                                              girl after her long battle with Aplastic     The impact of these diseases is            a cure. Critically, the findings in bone                                    December 2017)
                               making us the success we are and will
                                                                               Anaemia. It is tough being part of           magnified by the fact that they often
                               continue to be, your generosity and
                                                                               the highs and lows these families go         affect young, otherwise completely
                                                                                                                                                                       marrow biology of BMF will also result
                                                                                                                                                                       in improved understanding of AML and
                                                                                                                                                                                                                                                  $2,252,685
                               commitment is extraordinary and it is an
                                                                               through but it is the lifeblood of our       well people at a time when they            MDS biology and result in improved
                               honour to serve you as Chair.
                                                                               mission and we are grateful for their        should be at their most productive         outcomes for patients diagnosed with
                               I look forward to working with you all in       openness and welcoming us into their         in education and employment.               these life threatening conditions.                                         Funds raised financial
                               2018 as we strive to #fightlikemaddie           hearts when life sometimes couldn’t          The supportive care (blood product                                                                                    year 2016 - 2017
                                                                               be worse.                                    transfusions, antibiotics and              Critically, Maddie’s Vision has been
                               and make Maddie’s wish a reality.
                                                                                                                            hospital monitoring) and definitive        deliberately strategic in the type and                                     $683,660
                                                                               I know that this is also what drives the     therapies (complex immune                  nature of its awarding of funding. We
                                                                               extraordinary researchers that we            suppressing therapies and bone             have provided fellowship and project
                                                                               are funding. It is also what connects        marrow transplantation) are hugely         grants across these 5 pillars:                   *Grants are awarded every calendar year. This is an
                                                                               us with the generosity from our              expensive in terms of both direct                                                           ongoing cycle as we search the nation for the most
                                                                                                                                                                                                                        important research projects.
                                                                               Ambassadors. Together with the               costs (estimated at $300,000 per           1. Comprehensive clinical data and
                                                                               dedicated committee members, we              intensive hospital treatment and              sample collection on current and
                                                                               set important fundraising and granting       >$1,000,000 over the lifetime of the          newly diagnosed patients with BMF.
                                                                               targets to achieve our vision.               patient) and in terms of lost earnings     2. Genomic and epigeneomic control
                               Jennifer Trethewey                                                                           and lost opportunities for the patient        of Haematopoeitic Stem Cell (HSC)
                                                                               Maddie’s Vision isn’t able to achieve
                                                                                                                            and their carers. Critically even             survival, growth and differentiation.
                                                                               what we do without so many.
                                                                                                                            currently useful therapies such as

28                                                                                                                                                                                                                Snowdome Foundation – Annual Review 2017                    29
Maddie Riewoldt’s Vision
Highlights from Year in Review

3. The components and control of the      2017 - 2020: Genome editing of                                                        to-capacity crowd (45,000+), and
   HSC niche within the bone marrow       haematopoietic stem and progenitor                                                    the team were led onto the ground by
   (microenvironment)                     cells to uncover novel therapeutics                                                   Nick Riewoldt for one last time, making
                                          for aplastic anaemia and other bone                                                   Maddie’s Match a night to remember.
4. Abnormalities of immune function
                                          marrow failure syndromes (Dr Yih-Chih
5. Monitoring and predictors              Chan and Prof Mark Dawson, Sir Peter                                                  Off the field, the night was just
   (biomarkers) of prognosis,             MacCallum Cancer Centre)                                                              as unforgettable with Melbourne
   response to treatment and                                                                                                    rockers, British India, performing a set
   disease evolution                      2017 - 2019: Predicting malignant                                                     inside the arena, and limited-edition
                                          transformation of bone marrow failure                                                 merchandise selling out as Saints and
Fellowship grants have been directed      syndromes using longitudinal targeted                                                 Tiger fans got behind the cause.
at attracting and retaining the best      sequencing of peripheral blood
young researchers into the field of BMF   and cell-free DNA (cfDNA) (Dr Piers                                                   We give thanks to the football
in order to build capacity in research.   Blombery, Victorian Comprehensive                                                     community, media, Saints and Tigers,
Project grants have been directed at      Cancer Centre)                                                                        the committee, marketing and
utilizing existing research expertise                                                 Fundraising Highlights                    communication teams at both the
                                                                                                                                                                           patient, Indyanna “signed” with the          Flavorite co-founder Mark Millis
and technical capacity in order to        2017 - 2019: Prevention and treatment                                                 clubs and in particular, Quinn Snow &
                                                                                      ConverseXMaddie Partnership                                                          Boomers and the game was promoted            battled a blood cancer and knows
build a critical mass of research         of bone marrow failure in Fanconi                                                     Elliot Vanderland for being our heroes
                                                                                                                                                                           with Indyanna as the youngest (and           from personal experience how critical
activity in BMF.                          anaemia and other inherited disorders                                                 and supporting all of the important
                                                                                      In April 2016, Converse first partnered                                              shortest) contracted player in WNBL          medical research is to finding better
                                          – part 2 (Dr Wayne Crismani, St                                                       messages about what we are trying
                                                                                      with Maddie Riewoldt’s Vision to launch                                              history. From Geelong, Indyanna              patient outcomes.
The Maddie’s Vision board has a           Vincents Research Institute)                                                          to achieve.
                                                                                      an exclusive limited edition purple                                                  underwent a successful stem cell
robust and transparent annual granting
                                          In 2018, we will continue to grant          Maddie Chuck. Twenty dollars from each                                               transplant (from a match with her
process managed and supported
                                          funding to important research projects.     sale was donated directly to Maddie’s                                                sister) earlier in 2017 to treat her
by our Grants Committee. Through                                                                                                                                                                                        Left
                                          We are also actively fundraising for a      Vision. Last March, Converse continued                                               Aplastic Anaemia.
this process, we have attracted                                                                                                                                                                                         Richmond led out by Jack Riewoldt at
applications from researchers of the      Centre of Excellence in Bone Marrow         the partnership – growing the offer to                                                                                            Maddie’s Match
                                                                                      include new children’s sizes. A number                                               The day was a sea of purple and a great
highest standard and in the last two      Biology (approx. $3 million needed)                                                                                                                                           Above
                                                                                      of key people and celebrities supported                                              success. The Boomers wore a special
years, selected the following cutting     as well as establishment of a National                                                                                                                                        WNBL Melbourne Boomber fans with player
                                                                                      this generous initiative and we are                                                  purple uniform and asked supporters          Liz Cambage
edge research projects for funding:       Biobank (approx. $800,000 needed).
                                                                                      pleased to announce that it reached                                                  to also wear purple and ‘Dunk A Fiver’
                                          Both of these require long term funding
                                                                                      record sales, almost selling completely                                              to donate $5 to Maddies Vision.
2015 – 2018: The Australian Aplastic      commitments and are critical success
Anaemia Registry as a Means for           factors to bringing all of our current      through the range.                                                                                                                   Appreciation
Advancing Effective Treatment             projects together.                                                                                                               Flavorite – Maddie’s Month                      AK Willis Accounting
of Aplastic Anaemia (Transfusion
                                          For all of this work to date, we are                                                                                             Maddie Riewoldt’s Vision announced              Allen and Unwin
Outcomes Research Collaborative
                                          indebted to our volunteer grants                                                                                                 ‘Maddie’s Month’ and an annual                  ALI
(TORC). TORC is a consortium of
members of Monash University              committee – Prof Suzanne Crowe,                                                                                                  $100,000+ donation from leading                 Coles
Department of Epidemiology and            Dr Rachel Conyers and Prof David                                                                                                 glass-house tomato producer                     Converse
Preventive Medicine at The Alfred         Haylock. Our committee have                                                           Melbourne Boomers – Purple                 Flavorite Tomatoes.                             The Deakin Melbourne Boomers
Hospital, along with members of the       spent enormous hours, prioritising                                                    Power Day – WNBL                                                                           Flavorite
                                                                                                                                                                           Sales of Flavorite’s Cherry Burst
Red Cross Blood Service)                  their time to ensure they can meet,                                                                                                                                              Fox Sports
                                                                                                                                Joe & Fiona Riewoldt join Melbourne        Tomatoes and Vine Ripened Cherry
                                          review, assess and advise our board’s
                                                                                                                                Boomers as official ambassadors.           Tomatoes, sold exclusively through              Mercedes-Benz Brighton
2016 - 2019: Prevention and treatment     determination towards our vision.
of bone marrow failure in Fanconi                                                                                                                                          Coles stores nationally, will fund a            MoneyQuest Mortgages
                                          We are very grateful for their ongoing
                                                                                                                                Joe and Fiona have become                  research project at the Peter MacCallum         One Small Step Collective
anaemia and other inherited disorders     commitment to make a difference to
                                                                                                                                passionate fans of the Boomers             Cancer Centre. The research will focus          Paul Marc Masons
– part 1 (Dr Wayne Crismani, St           the lives of people impacted.”
                                                                                                                                women’s basketball team and were           on genome editing of haematopoietic
Vincent’s Research Institute)                                                         Maddie’s Match                                                                                                                       R.B. Flinders
                                          Prof. David Ritchie                                                                   an important part of the team’s home       stem and progenitor cells aimed at
                                                                                                                                game against Canberra on Saturday                                                          Richmond Football Club
2016 - 2018: Identification of miRNA      Grants Committee Chair                      The Saints, Richmond and broader AFL                                                 uncovering novel therapeutics for
                                                                                      community once again came together        November 18. Purple Power Day was          Aplastic Anaemia and other Bone                 Rotary Brighton
biomarkers which play a functional
role in disease pathogenesis and                                                      to support Maddie Riewoldt’s Vision on    held and Boomers supporters got their      Marrow Failure Syndromes (BMFS).                Saint Kilda Football Club
are predictive of inferior outcomes                                                   July 8 at Etihad Stadium. The previous    purple on to help celebrate Maddie         The project, led by Dr Yih-Chih Chan            SBA Law
                                          Above
in AA/MDS (Dr Lynette Chee, Royal                                                     two instalments of Maddie’s Match         Riewoldt’s Vision. The showcase game       and Professor Mark Dawson, continues
                                          Rebecca Maddern, AFL Footy Show
Melbourne Hospital)                                                                   have produced stunning scenes that        attracted a crowd of several thousand      Maddie’s Vision commitment to a                 For the full year in review
                                          Below
                                          Nick Riewoldt, Elliot Vanderland and Jack   transformed the stadium into a sea of     and a win for the Melbourne Boomers.       greater understanding of, and cure for,         2017, visit mrv.org.au
                                          Riewoldt, courtesy of Jason Edwards         purple. This year witnessed a close-      Nine-year-old, Bone Marrow Failure         Bone Marrow Failure Syndromes.

30                                                                                                                                                                                                                   Snowdome Foundation – Annual Review 2017     31
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