To the Mater Misericordiae University Hospital, Dublin - Sequencing Equipment to Provide Genomic

Page created by Robert Walsh
 
CONTINUE READING
To the Mater Misericordiae University Hospital, Dublin - Sequencing Equipment to Provide Genomic
to Provide Genomic
 Sequencing Equipment
to the Mater Misericordiae
University Hospital, Dublin

       www.shabracharity.com
                               1
To the Mater Misericordiae University Hospital, Dublin - Sequencing Equipment to Provide Genomic
Rita Shah, Co-Founder Member, Shabra Charity Foundation
                www.shabracharity.com

            The late Oliver Brady, was ‘One of a Kind’ who touched the lives
            and hearts of so many and he will never be forgotten. Oliver is
missed beyond what words can express but loyalty, being true to his word and
overall ethos, will always live on in The Shabra Charity we built together.

Shabra Charity Foundation was set up by Oliver and myself a few years ago and
together with a very strong committee we have raised over €600,000 and donated to St
Luke’s, Tallaght, Mater Hospitals to purchase much needed equipment for the heart, cancer
and eye care and also supported for research in cardiac and cancer. We have also built
schools in Nigeria and Kenya.

Why Shabra Charity is so special?? Oliver and myself as co-founders of the charity have
believed in full transparency – Shabra charity Foundation do not have any paid staff
whatsoever, and all our charity work is carried out by volunteers who with true generosity
work tirelessly giving their valuable time at no cost to raise monies for worthy causes. I take
this opportunity to salute all the committee members, sponsors and donors.

During his short treatment at the Mater Private, he promised the Mater (Public) Hospital
through Shabra Charity, to fundraise and supply much needed Specialist Genomic DNA Gene
Sequencing Equipment, the first in Ireland which would help the people in Ireland who are
dying due to lack of DNA Gene facilities.

I am determined to help Oliver to keep his last promise to the Mater Hospital by redoubling
The Shabra Charity fundraising efforts in order to provide this much needed equipment to
the Mater (Public) Hospital as soon as possible, in his honour and memory. All proceeds from
this event will be used towards the purchase of the much needed equipment.

Shabra Charity Foundation is a fully registered charity in Ireland was co-founded by Rita
Shah and the late Oliver Brady.
Fully registered Charity in Ireland - Registered Charity Number: CHY 19130
Reg. Office: Killycard Industrial Estate, Bree, Castleblayney, Co. Monaghan

--------------------------------------------------------------------------------------------------------------------------

                 Heather Humphreys TD, Minister for the Arts, Heritage and the Gaeltacht

            "I had the privilege and honour of knowing Oliver Brady who was an amazing
            man and whose vision and determination had such a positive impact on his
            community. He provided much needed employment in Co Monaghan through
the award winning company, Shabra Plastics.

"Oliver also had a huge impact on the lives of many people across the country through the
great work of the Shabra Charity Foundation. His legacy and generosity of spirit lives on today
through the continued fundraising efforts of his business partner and friend, Rita Shah."

                                                                                                                         2
To the Mater Misericordiae University Hospital, Dublin - Sequencing Equipment to Provide Genomic
Paráic Duffy – Director General GAA

             The GAA is delighted to host today's launch of the Shabra Charity Foundation
             fundraiser for the state of the art Gene Sequencing facilities at the Mater
             Hospital which will help save young people’s lives.

              Mary Day, CEO, Mater Misericordiae University Hospital, Dublin

              It is a great pleasure for me to take this opportunity to support Rita and the
              Shabra Charity Foundation on launching this outstanding fundraising campaign,
              in memory of Oliver, to purchase Genomic Sequencing equipment for the Mater
Hospital. Through the funds you have worked so hard to raise, this equipment will bring great
benefits to so many of our patients; including patients with cancer and non-cancer and
patients with rare and common disorders.
Research into genetics over the last thirty years has already resulted in a substantial change
in how we approach disease and health and we are excited by what the future holds and the
potential of this exciting technology.
The back-to-back approach of a clinical adult genetic service looking after patients with
genetic disorders and diagnostic testing in a state-of-the-art laboratory is an overdue
requirement for this country. The Mater has a cohort of clinicians with a deep interest in
genetics. Most have been involved in research and clinical aspects of genetics over the years
including cardiology, metabolic medicine (we have the adult centre for adult metabolic
disease on campus), neurology, ophthalmology, onco-genetics, liver, gastrointestinal
disorders and infectious disease. Therefore, the Mater has the interest, passion, drive and
space to set up this laboratory in parallel with the adult genetic service. This will be achieved
by working closely with UCD and the Dublin Academic Medical Centre and St Vincent’s
University Hospital.
I would like to express my sincere gratitude to Rita and Shabra for giving the Mater Gene
Sequencing project such a high profile and to thank everyone who has supported us in
creating a state of the art, world class genetics service in this country, your efforts have
achieved so much.

           Professor Peter O'Gorman MB FRCPI FRCPath PhD, Clinical Director of
           Pathology/Consultant Haematologist, Mater University Hospital, Dublin
           Professor of Experimental Haematology, Dublin City University

The tremendous fundraising effort by Rita and Shabra in memory of Oliver will enable us to
build a world class laboratory to compliment the clinical specialities at the Mater. This will
save lives.

                                                                                               3
To the Mater Misericordiae University Hospital, Dublin - Sequencing Equipment to Provide Genomic
Dr. Joseph Galvin, Consultant Cardiologist, Mater Misericordiae University
                 Hospital
                 Cardiac Genetics at the Mater

                 The Family Heart Screening Clinic at the Mater Heart House has been
                 providing comprehensive cardiac evaluation of families affected by sudden
                 cardiac death due to SADS (Sudden Arrhythmic Death Syndrome) or an
                 inherited cardiac disease since its opening in 2007.

Numbers have increased steadily from 251 patients in 2007 (246 new) to 1460 patients in
2014 (562 new). The culprit gene mutation responsible for a family’s inherited heart
condition or the tragic sudden cardiac death of a young person can be identified in up to 70%
of families and can be used to identify other family members who are at risk and most
importantly, those who are not at risk. Genetic testing is recommended in international
guidelines governing the management of families with inherited cardiac diseases.

Unfortunately, clinically accredited gene sequencing is not yet available in Ireland and blood
samples are sent abroad for genetic testing.

 Ireland is one of the few countries in Europe that has not developed expertise in clinical gene
sequencing within its own country. At the Mater Hospital, in collaboration with UCD and the
Dublin Academic Medical Centre we now plan to set up a clinical gene sequencing programme
that will benefit patients and families with inherited diseases not only effecting the heart but
effecting any organ system including inherited neurological, metabolic, gastrointestinal,
endocrine and ophthalmic diseases.

To fund this will require significant investment. We are delighted that SHABRA has offered to
help the Mater achieve this goal by helping us purchase the critical gene sequencing
equipment required to run the programme. We estimate that this will cost approximately
€750,000. Thank you to SHABRA and to all its contributors and supporters for helping us
provide this badly needed service.

                Dr David Keegan, Consultant Vitreo-Retinal Surgeon, Mater Misericordiae
                University Hospital, Dublin

                "With the adoption of the National Care Plan for Eye Care and the successful
                roll out of the Diabetic Retina Screen programme we are going in the right
                direction to tackle preventable blindness in Ireland.

Now is the time to start developing the tools and practices to address the currently non-
preventable causes of blindness such as inherited retinal degeneration.

The ability to accurately determine the genes that cause retinal degeneration is vital to best
direct patients’ management. New treatments such as gene therapy, artificial retinas, stem
cells and growth factors are on the horizon.

 If Irish patients are properly characterised (via a genomic testing system) they can benefit
from treatments here or as part of clinical trials elsewhere. Perhaps even more importantly
their children and younger relatives will benefit from a familial characterisation so therapy
can be implemented early.

With a properly co-ordinated system also employing more geneticists and counsellors we can
herald a new era in care for patients with genetically determined ocular conditions."

                                                                                              4
To the Mater Misericordiae University Hospital, Dublin - Sequencing Equipment to Provide Genomic
Prof Timothy Lynch, FRCPI, FRCP (Lond), Consultant Neurologist, Mater
                  Misericordiae University Hospital, Dublin

                  "I promised to put to pen a couple of thoughts I had with regard to this
                  initiative. When I was a medical student it was apparent to me that there
                  two main areas of science that were going to change medicine. These
                  included immunology and genetics.

Genetics is so crucial. It touches upon all aspects of medicine including paediatric care, adult
healthcare, cancer, non-cancer, and rare and common disorders. It is the backbone of who
we are and defines us and our next generations.

 Research into genetics over the last thirty years has already resulted in a massive change in
how we approach disease and health. Ireland needs to develop a world class genetic service
for children, adults, patients with cancer and non-cancer and patients with rare and common
disorders.

This service can be developed at the Mater with Shabra’s support.

Shabra’s support will allow us to set-up a national Molecular Diagnostic Laboratory to provide
diagnostic testing for patients across Ireland with different forms of genetic disorders
including obstetrics, paediatrics, adult medicine, cancer and non-cancer, rare and common
disorders.

 We will support the diagnostic laboratory with our adult genetic service. We already have 3
adult geneticists on campus and we plan to recruit more. The back-to-back approach of a
clinical adult genetic service looking after patients with genetic disorders and diagnostic
testing in a state-of-the-art laboratory is a requirement for the country.

This will not only provide an excellent clinical service but will also stimulate academic teaching
and research.

We already have a specialist registrar in genetics working on the Mater campus rotating
through various services including metabolic disease, adult genetics, neurogenetic clinic,
cardiology/genetic clinic and cancer genetics. Secondly the National Office for Rare Diseases
is based in the Mater under the supervision of Prof Eileen Tracey.

Most rare diseases have a genetic background and hence the laboratory will have a close
working relationship with this office in the future. The Mater has a cohort of clinicians with a
deep interest in genetics. Most have been involved in research and clinical aspects of genetics
over the years including cardiology, metabolic medicine (we have the adult centre for adult
metabolic disease on campus), neurology, ophthalmology, oncogenetics, liver,
gastrointestinal disorders and infectious disease. Furthermore UCD and the Mater are about
to appoint 4 Professorial Chairs in medicine, pathology, gynae/oncology;
microbiology/infectious disease and cancer genetics. It is likely that all these Chairs appointed
will have to have significant molecular biology training.

Therefore the Mater has the interest, passion drive and space to set up this laboratory parallel
with the adult genetic service. This will be done working closely with UCD and St Vincent’s
University Hospital via the Dublin Academic Medical Centre. It will be a state-of-the-art
service."

                                                                                                5
Current Shabra Fundraising Activities:
 €5 Draw for tickets to all the games at Croke Park – draw to take

  place on 9th July, 2015

 Donate online to be included in the Book of Remembrance which

  will be kept on display alongside the Genomic Sequencing

  Equipment in the Mater Misericordiae

  University Hospital

 Text Donation (see last page)

 Suck a Lemon Challenge (see Shabra Charity Facebook)

 Fundraiser at Shannonside Midsummers Day with the Stars Concert

  at Roscommon Racecourse on 28th June 2015

 Shabra charity Oliver Brady Memorial Cycling Event to be held on

  5th September, 2015

 Shabra Charity Oliver Brady Memorial Horse Racing Event – to be

  held on 24th January, 2016 at Leopardstown Race Course.

           Further Details please visit www.shabracharity.com

                                                                      6
Shabra Charity Foundation
                            Fundraising for the
      Genomic Sequencing Equipment for the Mater Hospital
                      on Thursday 18th June 2015 @ 2.30pm

  MC:

  Brendan McGowan (Member of Shabra Charity Foundation)

  Speakers:
 Rita Shah (Co-Founder of Shabra Charity Foundation)

 Paráic Duffy (Director General of GAA)

 Mary Day (CEO of Mater Hospital)

 Joe Galvin (Consultant Cardiologist)

 David Keegan (Consultant Vitreo-Retinal Surgeon)

 Peter O’Gorman (Consultant Haematologist)

 Minister Heather Humphreys TD, (Minister for Arts, Heritage and the Gaeltacht)

  Event Contact Name & Number:       Rita Shah    087 9317100 / 086 8543743
                                     Nudie Hughes 087 7708661
                                     Anita Smyth 087 9317077

                                                                        7
8
You can also read