The global fight to end MND - Record numbers of delegates attend our International Research Symposium - Winter 2018

 
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The global fight to end MND - Record numbers of delegates attend our International Research Symposium - Winter 2018
The magazine of the Motor Neurone Disease Association

 Six pages                                                   Winter 2018
of research
 inside this
   edition

The global fight
  to end MND
Record numbers of delegates attend our
  International Research Symposium
The global fight to end MND - Record numbers of delegates attend our International Research Symposium - Winter 2018
For mND

                                                      GAZE
                                                      COMPATIBLE

2   www.mndassociation.org
                             , part of the   family
The global fight to end MND - Record numbers of delegates attend our International Research Symposium - Winter 2018
6–7
International Research Symposium
Read some of the highlights from our
                                                            welcome…
28th International Symposium on                             I have just returned from our 28th
ALS/MND
                                                            International Research Symposium on
8–9                                                         MND in Boston where we saw the largest
Making the most of life with MND
Three people living with MND share how                      number of delegates, with 1,300 of the
they continue to enjoy their interests
                                                            world’s leading MND researchers and
12 – 13                                                     clinicians attending our annual event.
“Fundraising is a big step towards
me trying to deal with the loss of                          This continued growth in the number
my Mum.”                                                    of delegates is a strong reflection of the
Vicky talks about her experience as a
fundraiser and young carer                                  increase and range of research taking
14 –15                                                      place around the world, to understand
Revisiting lithium trials highlights                        the causes of MND and find new treatments (see page 6 and 7). This
importance of precision medicine
Dr Ruben van Eijk comments on the
                                                            is extremely heartening and, through this international collaboration,
findings of the study                                       we will be able to continue to accelerate progress.
20 – 21                                                      Much of the growth in research is only made possible due to
“I believe we will find a treatment                         the support of MND communities globally. Currently the MND
in my lifetime.”
Prof Ammar Al-Chalabi answers the                           Association is funding 88 research projects thanks to our own MND
question ‘are we really making progress?’
                                                            community, and we know the majority of you have been personally
24 – 25                                                     touched by the disease. Thank you for your fundraising efforts.
Helping people with MND ‘keep’
their voice                                                  Closer to home, sadly we know people with MND are still facing
Our first voice banking volunteer,                          unacceptable challenges accessing benefits like Employment and
Kim explains how she helps people bank
their voice                                                 Support Allowance (ESA) and Personal Independence Payment (PIP).
                                                            At our recent parliamentary reception, the All Party Parliamentary
ON THE COVER This image, by research scientist Ricarda      Group on MND, launched its report on PIP. We will continue to
Menke with Prof Martin Turner from the University of
Oxford, shows a modified image of brain sliced vertically   actively campaign on this issue to ensure people with MND are
through the motor regions. There are colour-coded blobs
showing the relative diffusion of water through the nerve   getting access to the benefits they are entitled to and do not have to
pathways of the brain. The main descending motor tracts
that are so damaged in MND are marked in yellow.            endure pointless reassessments (see page 26 and 27).
                                                             For some of us, the New Year is the perfect time for setting new
                                                            challenges. If, like me, you want to make a positive difference in 2018,
                                                            why not take a look at the events diary enclosed in this edition of
Thumb Print is the quarterly magazine of the
                                                            Thumb Print. Last year I joined #TeamMND and cycled from London
Motor Neurone Disease (MND) Association,
PO Box 246, Northampton NN1 2PR.                            to Paris with my partner on our tandem! It was definitely a challenge,
Reg. charity number 294354.
                                                            but also one of my highlights from 2017.
Editorial and advertising enquiries:
Mel Barry, Editor, 01604 250505                              Thank you for everything you do to support our vital work and I
editor@mndassociation.org
                                                            wish you a very happy and peaceful New Year.
If you have comments or feedback about
the magazine and its content, please do not
hesitate to get in touch.
Thumb Print is available to read online
and as a downloadable pdf at
www.mndassociation.org/thumbprint
                                                            Sally Light
The views expressed in Thumb Print are not necessarily
those of the Association. The advertisement of third
party products or services does not in any way imply
                                                            Chief Executive
that those products or services will be provided,
funded or available via the Association.

                                                                                                  		www.mndassociation.org             3
The global fight to end MND - Record numbers of delegates attend our International Research Symposium - Winter 2018
Credit Suisse UK charity partnership
smashes £600,000 target

O
          UR special year-long partnership     our MND Care Centre Network to enable
          with Credit Suisse has now come      more people with MND to have access to
          to an end and we are very proud of   a specialist centre, with some of the funds
everyone involved. The target of £600,000      raised contributing to the opening of our
was smashed, thanks to the creative            21st MND Care Centre in Norfolk. It has
fundraising of Credit Suisse employees.        also allowed us to launch our two year
  Since our update in the last edition         pilot project to help people with MND
of Thumb Print, Credit Suisse has held         to bank their voice by providing funding
a special dinner and auction hosted by         for the equipment. Finally there has
renowned chef Michel Roux Jr and a carol       been investment in ProjectMinE, to help
concert where Association patrons and          understand the genetic causes of MND.
supporters; Eddie Redmayne, Charlotte            We would like to thank Credit
Hawkins, Deborah Meaden and David              Suisse staff for their dedication and
Gower gave seasonal readings.                  commitment. The money they have
  The support from Credit Suisse has           raised will make a big difference to the
provided funding for three programmes.         support we can provide people living
Part of the money has been invested in         with MND.

4    www.mndassociation.org
The global fight to end MND - Record numbers of delegates attend our International Research Symposium - Winter 2018
£1m of benefits
                                                                                                     identified for
                                                                                                     people affected
                                                                                                     by MND

                                                                                                     S
                                                                                                           ince its launch earlier this year,
                                                                                                           our benefits advice service has
                                                                                                           now identified £1million worth
                                                                                                     of benefits people affected by MND
Tennis match in the clouds raises £54,000                                                            were eligible to claim. John Gillies-
                                                                                                     Wilkes, Regional Delivery Manager at

P
      aul Jameson, 57, was diagnosed with           “Not happy with just a Mount Kilimanjaro         the MND Association said: “We knew
      MND earlier in the year, but that didn’t   climb, we wanted to do something even               this service had the potential to make
      stop him breaking (unofficially at time    better and have a tennis match at the               a big difference to people, and thanks
of going to print) a Guinness World Record       summit. People thought we were mad, and             to the Ice Bucket Challenge, we were
for the highest ever altitude game of tennis.    we probably are, but life is too short and          able to fund it. In just eight months
Following his epic climb to the top of           I’ve always enjoyed challenges. Our aim was         we have so far identified over £1
Mount Kilimanjaro, Paul said: “I have been a     to raise £50,000 for MND research, as I’d like      million of benefits.
member of my local tennis club for over 20       other people in the future to benefit from            “Many families do not know what
years. Only a few days after I was diagnosed,    the money we’ve raised.”                            benefits they are entitled to and how
very good friends from the club came over           To find out more about Paul’s trek and           to claim them. Our benefits advice
and we discussed bucket lists and what I         Guinness World Record attempt visit                 service guides
wanted to do.                                    www.kilimasters.com                                 them through
                                                                                                     the system and

“Share my experience with others.”
                                                                                                     ensures they
                                                                                                     are claiming

T
      elevision editor                                             Half Life deals with the          everything they
      turned writer/director                                       experience of being               are entitled
      Sarah Gray, has                                              between life and death            to. With the
worked on hundreds of                                              which reflects my current         service’s                                                                 Welfare
                                                                                                                                                                               benefits
                                                                                                                                                                               advice

programmes and written                                             outlook. It is being used         specialist
                                                                                                                              Benefits Advice Service
and directed her own                                               by my palliative care             knowledge,               An introduction for MND Association staff,

                                                                                                     claimants
                                                                                                                              volunteers, care centres and health and

short films. In October                                            specialist as a training tool.                             social care professionals

2015 Sarah received a                                              My latest collection, Urban       can receive                       England and Wales: 0808 801 0620
                                                                                                                                       Northern Ireland: 0808 802 0020

                                                                                                     benefits far
                                                                                                                                       www.mndassociation.org/benefitsadvice

devastating diagnosis of                                           Creatures is due to be
MND. Sarah describes how                                           published in Spring 2018.         quicker. Indeed,
MND has affected her and                                             I now have to use               many people living with MND don’t
how she is determined to                                           speech recognition                realise that a Personal Independence
continue to write.                                                 software, which is                Payment claim that usually takes
    Sarah said: “MND                                               amazing and frustrating           between six weeks to six months,
has affected my life in                                            at the same time – it’s not       can be reduced to just six days if the
every way imaginable. I                                            always accurate and can           claim is made under ‘special rules’.
was only 43 when I was                                             be slow.                          Knowledge like this is invaluable to
diagnosed and it was devastating to deal            In terms of subject matter, I have               families affected by MND.”
with a significantly reduced life span, as
well as coping with the gradual onset
                                                 written a lot about what it means to be
                                                 outside of the norm and how dealing with
                                                                                                     Benefits advice
of disability. Loss of independence and          something sets you apart from others. As            service
control, identity and intimacy are tough.
Relationships change and a more intense
                                                 well as the physical dimension it is a very
                                                 lonely place and I wanted to share that
                                                                                                     (free to call)
level of trust develops. Everything is           experience through my writing.
difficult and takes a lot planning – nipping        “During the process of my diagnosis
                                                                                                     England and Wales
around is a thing of the past.
   “Previously I had studied for a Masters
                                                 the MND Association was there at the
                                                 end of a telephone to offer support. I
                                                                                                     0808 801 0620
degree in literature, and I did a Creative       recently organised a story-telling event
Writing Diploma. My writing developed            to raise money and awareness for the                Northern Ireland
from there until I had enough for a
collection. I have now published two
                                                 MND Association and as well as being
                                                 a really fun evening I was happy to give
                                                                                                     0808 802 0020
collections – Surface Tension and Half Life.     something back.”

                                                                                                    		www.mndassociation.org                                                   5
The global fight to end MND - Record numbers of delegates attend our International Research Symposium - Winter 2018
The world’s leading MND
    researchers under one roof
          Over 100 talks, 400 posters, and 1,300 delegates at
     this year’s International Symposium on ALS/MND in Boston.

O
           UR annual Symposium is not          prognosis (biomarkers, or technology and             Masitinib, a drug attempting to reduce
           only a chance for researchers       ALS), developing treatments (eg clinical          inflammation in motor neurones, was
           all around the world to learn       trials, or therapeutic strategies), and           found to delay disease progression and
about new findings and techniques              management of symptoms (eg cognitive              slow down progression of symptoms.
developed by different labs to improve         change, and respiratory management).              While a further clinical trial is now due to
their own studies. It is also an opportunity   The posters were split into 14 themes, with       provide more data, masitinib is currently
to spark conversations about new               two additional themes that presented              under investigation by the European
collaborations, which can eventually lead      research that is still ongoing, but showing       Medicines Agency (EMA) in order for it
to finding new treatments.                     promising signs.                                  to be licensed as an MND treatment in
   A typical day at the Symposium                                                                      Europe.
starts with a large number of talks                                                                       Another drug, tirasemtiv, recently
that are intertwined with coffee                                                                       failed its primary objective to
and lunch breaks, which are a great                                                                    improve breathing function and
opportunity for researchers to                                                                         was shown not to be well tolerated.
network. In the evening, everyone                                                                      Its successor (called CK-2127107),
meets in a large room filled with                                                                      working on a similar principle as
research posters to complement                                                                         tirasemtiv, already showed improved
the findings presented during the                                                                      tolerability and will be tested for
day. Poster presenters are available                                                                   beneficial effects in future trials.
at their own posters, to explain the                                                                      Ibudilast has recently finished
rationale and process of their study                                                                   Phase 1/2 clinical trial in which the
in detail to anyone who is interested.                                                                 drug was shown to be safe and well-
This is a great place for delegates to                                                                 tolerated. Preliminary analyses also
suggest (and learn) improvements of their        From new genes and development of               showed that the ALSFRS score (measuring
study design, follow-up studies, or discuss    therapies, to ways to diagnose and track          functional change) didn’t decline in some
new collaborations.                            the disease and innovative methods                participants, but these results now need
   To make sure that as much of MND            to manage symptoms, the Symposium                 to be replicated in further bigger trials to
research as possible is covered, the talks     highlighted the progress made in 2017.            determine beneficial effects of ibudilast.
are split into sessions, and posters into
themes. This year, we had 11 sets of           Treatments                                        New genes
sessions; most of these included two, or       While there are currently many clinical           Finding new genes that are associated
sometimes three, parallel sessions, with       trials looking at new treatments for MND,         with the development of MND is no easy
around five talks in each. The sessions        lots of them are in the early stages of           task. Since the discovery of the SOD1
covered topics such as biomedical              investigation. Aside from learning new            gene in 1993, the average time taken to
research (eg RNA transport, TDP-43, or         lessons on how to improve design of               announce a new gene discovery has been
Neuroinflammation), causes of MND (eg          clinical trials, we also heard results on drugs   about one per year (although the process
Genetics, or Epidemiology), diagnosis and      that have recently sparked a lot of interest.     behind finding a new gene takes much

6    www.mndassociation.org
The global fight to end MND - Record numbers of delegates attend our International Research Symposium - Winter 2018
longer). At this year’s Symposium, three
new genes associated with MND were
presented, and updates on these will be
                                             Awards at the Symposium
provided soon.
                                             The Symposium is also a time to award those who
Symptom management                           made a difference in the world of ALS/MND.
Prof Chris McDermott announced
the launch of the HeadUp collar, an          International Alliance Humanitarian           Shay Rishoni Patient Impact Award
innovative neck support with a lot of        Award for internationally significant non-    awarded by Prize4Life for patients who
technology embedded in it. The collar        scientific contribution for people affected   made significant and outstanding
consists of a material base, so it can go    by MND.                                       contributions to ALS/MND research and
under clothes, and it includes a thermo-     Pete Frates, Patrick Quinn and Anthony        drug discovery efforts.
regulatory layer, so it has the ability to   Senerchia Jr. for their significant           Bernard Muller and Robbert Jan Stuit for
cool a person down when they are hot,        involvement in the Ice Bucket Challenge       their initiation of Project MinE, the largest
or warm them up when they are cold.          that raised over $220 million worldwide       international genetic MND research
It adapts to the needs of patients and       to fund MND research.                         analysing DNA of over 22,000 people to
it is very easy to add extra support. An                                                   understand the genetic basis of MND.
                                             International Alliance Forbes Norris
extensive evaluation found that 80% of
                                             Award for researchers advancing the       Symposium Poster Prize to celebrate
people preferred it to other collars. The
                                             management and understanding of MND.      the high quality of clinical and
HeadUp collar will be available on the
NHS from April 2018. There will be more      Dr Merit Cudkowicz, Chair of Department biomedical posters presented by
                                             of Neurology at the Massachusetts         early-career researchers during the
information on this in the spring edition.
                                             General Hospital, leader in MND           Symposium.
                                             research, passionate patient advocate,    Katerina Placek (University of
                                             and mentor of young researchers           Pennsylvania) for her biomedical poster
  More information                           involved in clinical trials.              on genetic factors associated with frontal
  Find out more about what was talked                                                  disease in ALS.
  about at the Symposium on our              Paulo Gontijo Award for outstanding
                                                                                       Mehdi van Den Bos (University of Sydney)
  dedicated webpages:                        young investigators working on ALS/
                                                                                       for his clinical poster on imbalance in
  www.mndassociation.org/                    MND based on significance of their
                                                                                       cortical inhibition-excitation network and
  symposium/symposium-live                   published scientific paper.
                                                                                       its effect on cortical hyperexcitability.
  Read live tweets from the Symposium        Dr Marka Van Blitterswijk, Assistant
  as it was unfolding using #alssymp         Professor of Neuroscience at Mayo
  For a more detailed overview               Clinic, Florida, USA, helped increase the
  of the research discussed visit            knowledge of treatment strategies and
  mndresearch.wordpress.com                  prognostic tests for MND.

                                                                                           		www.mndassociation.org                        7
The global fight to end MND - Record numbers of delegates attend our International Research Symposium - Winter 2018
Making the most
For people living with MND, more planning and support may be needed, but a diagnosis does not mean you have
to let go of your interests. As the disease progresses, you may of course need to adapt and do things differently. Our
new booklet, Making the most of life with MND, looks at ways to help you achieve this.

W
            HEN Lee Millard was diagnosed      at life after diagnosis are neither those              “Leading up to diagnosis my head was
            with MND, he was devastated        who refuse to change or those who fall             all over the place. While the diagnosis was
            and worried about the future for   into a wheelchair like a duck to water. Be         devastating, personally I felt better for
him and his family. He was doing a job he      somewhere in the middle.’                          knowing. I took it on the chin and thought
loved at multinational tech company IBM           “He is right, be flexible – I have taken        I will not let it beat me. That is the attitude
and enjoyed frequent trips abroad. MND         that advice. Life is about having aims. As a       I have kept ever since. But there are days
sadly meant some significant changes to        salesman, you have to have a motivation.           when I wish I wasn’t me anymore, when I
this lifestyle.                                No one did my job for me. After being              could go back to how I used to be. I was a
   Lee said: “MND hits in two ways. First      diagnosed, no one would live the rest of           very active and independent person, so to
there is the absolute emotional punch          my life for me. I’ve had to adapt and not          have those things slowly taken away from
that you are almost certainly going to         mourn what I can no longer do, but find            me is hard to adjust to.
die from this disease. This did not last       things I can do. It was after reading about            “Of course, there are things that I have
long, and strangely now, despite very real     another person with MND in America, that           had to give up, like golfing. But rather than
progression, I am happy. Obviously I would     I found the recumbent trike. This is the           focus on what I can no longer do, I focus
rather it not have happened, but it has, so    only exercise I do now. Yes I miss those           on what I can do. I am still working and
there is no point in dwelling on it.           things, but nothing lasts forever.                 I want to continue to do that for as long
   “The second hit is on the physical side;       “I first started to ride the trike nearly two   as I possibly can. To do this I have had to
I was a runner, cyclist, skier and gym         years ago. It has totally changed my life          make changes. I have employed a friend
fanatic. In the first year after diagnosis,    and got me exercising and outside again.           who comes with me to pick up the dogs. I
I had to stop running and cycling, I just      I see it as a wheelchair, but powered by           struggle with using keys, so she helps with
couldn’t manage it anymore. But, I will        me. When I am out on my trike, I have              this and all the other things I can’t do.
never forget what my neurologist said to       many different feelings. It’s fresh air, and           “I was very keen to be involved in the
me on the day of diagnosis. I had asked        I am travelling around the village seeing          MND Association. My family and friends
him about the progressive disability, and      people, and feel pretty much normal! It’s          also wanted to get involved and start
how do people cope. He was blunt in            great. I get many comments, ‘Look at the           raising money. I want to stay as active as
his reply: ‘Lee, be prepared to adapt, and     bike Mum, can I have one?’”                        possible for as long as possible so I did
be flexible. The people who do the best           For the last six years Samantha Tooze           a 5k fun run. My amazingly supportive
                                               has run her own dog walking business.              family have so far raised over £4,000 for my
                                               Since her diagnosis of MND in 2017, she            Fightback Fund. As well as helping others,
      “For people living with                  is determined to continue to work and to           fundraising has really helped my family to
      MND, more planning                       stay as active as possible.                        lift their spirits and have some fun.
      and support may                                                                                 “As for next year I am already making
      be needed, but a                                                                            lots of plans, including a skydive. I am
                                                                                                  always set for a challenge and the next big
      diagnosis does not                                                                          adventure. Whilst my independence has
      mean you have to let                                                                        changed, my personality hasn’t. The only
      go of your interests.”                                                                      thing about me that has changed is that
                                                                                                  I used to think about other people rather
                                                                                                  than myself. Now I think about myself
                                                                                                  more and what I want to do.”
                                                                                                      Carol Johnson was diagnosed with
                                                                                                  MND in 2008. Carol said: “Receiving the
                                                                                                  diagnosis was the worst day of my life,
                                                                                                  I thought I was going to die. I hated it,
                                                                                                  always falling down, dragging my left leg
                                                                                                  and unable to wear high heel shoes.
                                                                                                      “After losing my speech a year later, I
                                                                                                  had to stop working and that was very
                                                                                                  hard for me. I have never accepted the
                                                                                                  disease, and it does make me sad, but
                                                                                                  I am now learning to focus on things I
Lee Millard riding his recumbent trike

8       www.mndassociation.org
The global fight to end MND - Record numbers of delegates attend our International Research Symposium - Winter 2018
of life with MND
“Rather than focus on
what I can no longer do,
I focus on what I can do.
I am still working and
                                                                       “I have learnt
I want to continue to
                                                                       that you cannot
do that for as long as I
                                                                       let MND rule your
possibly can.”
                                                                       life, you have to
                                                                       take charge and
                                                                       enjoy life to the
                                                                       full, as there will
                                                                       be no second
                                                                       chances.”

Samantha Tooze, right, with her friend Bev

enjoy doing. I am unable to walk, unable
to speak, and I have carers to help me
with most things. However, I really enjoy
arts and crafts and my brilliant art teacher
at the day centre encourages me to do
things I would have never dreamed of
doing. When I am doing art I forget I am
seriously ill. It’s the best remedy to keep
your mind busy. I have learnt that you
cannot let MND rule your life, you have to
take charge and enjoy life to the full, as
there will be no second chances.”
   Our new booklet was developed in
response to many requests from people
with MND asking for information on how
to make the most of life. Helped by people
living with or affected by MND, our new
booklet includes tips on how to continue
to enjoy interests and activities. It also
shares a selection of personal experiences
of people with MND, who have found ways
to continue doing things they enjoy.

   You can download Making the
   most of life with MND by selecting
   the option for Guides at: www.
   mndassociation.org/careinfo
   Or order a printed copy from MND
   Connect: Telephone:
   0808 802 6262 or email:
   mndconnect@mndassociation.org

                                               Carol Johnson

                                                               		www.mndassociation.org      9
The global fight to end MND - Record numbers of delegates attend our International Research Symposium - Winter 2018
A seven month journey around the
    health system in Northern Ireland
    In July, Siobhan Rooney became the first person in Northern Ireland to be
    elected to our Board of Trustees. During her career Siobhan has worked as
    a nurse, midwife and health visitor, and held senior management positions
    in a number of Health and Social Care Trusts and at Department of Health in
    Northern Ireland (NI). Siobhan shares her motivation for becoming a trustee.

M
“              Y husband Martin, started to       home. We didn’t know what the journey
               experience difficulty with his     would entail. With the help of my two sons
               speech and swallowing in March     Barry and David, and their wives Ania and
    2007. It became increasingly clear there      Katherine, our home was rearranged to
    was something seriously wrong. Later that     accommodate Martin’s needs.
    year our GP referred us to the hospital.        “His needs were extensive with invasive
    That was the beginning of a seven month       ventilation, continuous supervision and
    journey that took us around the health        24 hours a day, seven days a week nursing
    system in Northern Ireland.                   care, along with eight weekly return trips
      “We never expected MND and had              to hospital for a change of tracheostomy
    very little awareness of it. Martin was       tube and feeding tube.
    admitted to hospital in 2007 for a number
    of respiratory investigations, but still       “After a lot of encouragement
                                                                                                  Martin Rooney
    no diagnosis. Six months later he was          I decided to apply to become
    admitted to hospital and ended up in           a trustee. I had to negotiate for              to apply to become a trustee. I had to
    intensive care after going into respiratory    the support and care that we                   negotiate for the support and care that
    arrest. We had our two sons with us and it     received for Martin.”                          Martin received. I knew the system, having
    was there we finally received the diagnosis                                                   worked within the Health and Social Care
    of MND.                                           “I soon became Martin’s main nurse and      Service in Northern Ireland and even with
                                                  carer. Despite his complex nursing care         all my contacts, I still found it hard. So how
                                                  needs we had no identified care package         hard must it be for people who don’t have
                                                  until three days before he died.                my background and experience?
                                                     “Looking back, I don’t know how my              “It was wonderful to be elected and
                                                  sons and I did it. It was an exhausting         I’m very proud to be the first person from
                                                  time. I was helped by my background             Northern Ireland to join the Board. I am
                                                  in nursing and was not fazed by the             passionate about the need to find a cure
                                                  management of the tracheostomy tube,            for MND. I want to use my experience,
                                                  invasive ventilation, feeding tubes and         knowledge and background to help
                                                  deep suction he continually needed in           improve the care people living with MND
                                                  our home. Family and friends were all           receive, have access to the services that
                                                  very supportive and one nurse who has           they need to enable them to fulfil their day
                                                  become a good friend went beyond her            to day living activities and maintain their
                                                  hours to help.                                  quality of life.
                                                     “Martin knew when he was ready to               “While the care is somewhat better than
                                                  go. He was tired. After Martin’s death, I       when Martin died, it still needs to improve
                                                  received a lovely letter from the neurology     dramatically across the UK. I am proud
                                                  consultant. He said Martin wouldn’t have        to be part of a strong charity and look
                                                  lasted a month in hospital. It was only from    forward to finding new ways to influence
                                                  the care he received at home, that he was       care and improve clinical research through
                                                  able to live for 18 months.                     new collaborations locally, nationally and
    Siobhan and Martin
                                                     “Martin has been dead for eight years        internationally.
      “Martin was very ill and having trouble     now. After his death, I joined the Northern        “In Northern Ireland, I want to be more
    breathing. He had a tracheostomy, a           Ireland Branch, where I met a wonderful         proactive in engaging and lobbying key
    feeding tube and was given just one month     group of very dedicated and committed           strategists, politicians, commissioners
    to live. Martin wanted to go home, but        volunteers. Shortly after joining the branch,   and service providers in the NI Health
    this was viewed as too high-risk by some      I became an Association Visitor and I’m         and Social Care Trusts improve access to
    community staff. I was determined to fulfil   now the branch contact.                         services, service provision and in particular,
    Martin’s wishes and insisted we take him         “After a lot of encouragement I decided      respiratory services.”

    10     www.mndassociation.org
F
     OR me, this time of year is about
     reflecting on the last 12 months,
     alongside making plans for the future.
Now we are in 2018, we have entered
the second year of our five-year strategy.
Last year, we saw some changes to the
Board, with a number of new trustees
elected. This has brought a significant
change for us all as these new faces also
bring different knowledge, experiences
and expectations. However, our focus and
determination that our work positively
impacts the largest number of people
with MND as possible, remains the same.
  Our strategy is about adapting what
we plan to do to nationally to fit what

Our focus and
determination
remains the same
is actually happening at a local level –
something of importance for all of us. I am
pleased to say that as trustees, making sure
people get what they need locally remains
a priority for everyone from volunteers to
the Chief Executive (see page 28 for more
information on our regional work).
   At the York Regional Conference last
November, I saw the importance of
this regional focus and how vital our
conferences have become in providing
information and support to people living
with MND, their carers and families. I am      Alun Owen, Chair of Board of Trustees
very pleased that the number of people
attending our regional conferences is          read the stories about the people involved       For more information please see our
increasing, with thousands more watching       in this project on the website. If you are    information sheets Information sheet 7A –
annually via our Facebook livestreams. If      currently faced with the decision, I would    Swallowing difficulties and 7B Tube Feeding.
you haven’t been to a Regional Conference      recommend you take a look.                    You can download our publications at:
already (or indeed even if you have) I            This year will be my last as Chair, with   wwwmndassociation.org/publications
would recommend you try to attend or           Chair-elect Richard Coleman, ready to take    or order printed copies from our MND
watch online one of the four regional          over from me in July. Over the coming         Connect helpline: 0808 802 6262,
conferences this year. Volunteers help set     months Richard and I will be working          mndconnect@mndassociation.org
the programme for conferences and we           closely together to ensure a smooth
encourage them to take part, which makes       handover for him to take up the lead. And
the event especially relevant to each area.    as for me, after July, although I will no       Dates for regional conferences 2018:
   At the York conference, we focused on       longer be a trustee, I will be continuing       24 March – Wyboston Lakes,
feeding tubes, sometimes known as ‘PEGs’       my volunteering locally as an Association       Bedfordshire
(RIGS or PIGS). Deciding whether to have       Visitor, branch committee member and            29 April – Castle Green Hotel, Kendal
one of these is an important decision. At      as an MND Connect helpline volunteer.
                                                                                               20 May – Holiday Inn, Filton, Bristol
the conference, we showed the ‘My Tube’        So I will still be busy supporting this
                                               wonderful charity and hope to continue          15 September – Dunsilly Hotel,
website www.mytube.mymnd.org.uk
                                                                                               Antrim, Northern Ireland
which is a fantastic resource for anyone       the many friendships I have made at future
considering getting a PEG fitted. You can      conferences and events.

                                                                                             		www.mndassociation.org                 11
yourstories

          Fundraising is a big step
          towards me trying to deal
          with the loss of my Mum

V
         icky Paeschel’s mum lived with                                                         aiming to raise £10,000 and complete a
         MND for just nine months before                                                        series of runs totalling 100k.
         she died aged 39. The eldest of six,                                                      “No matter how tough these runs
Vicky was 18 at the time. Her youngest twin                                                     may be, the challenges Mum faced
brothers were only three.                                                                       living with MND were far greater. With
   Ten years on from her mother’s death,                                                        every kilometre I run, I think of her. It
Vicky is determined to raise as much money                                                      has been her incredible strength and
as possible for the MND Association.                                                            determination to continue fighting,
   “My Mum was the most caring person                                                           that has been my motivation to keep
you could ever imagine and always put                                                           pushing myself, train harder and
us children first. She was a stay-at-home                                                       show my siblings that our shattering
Mum, looking after my twin brothers. Even       was happening at the time. Now she has          experience with MND can help to
when she started to struggle with her           gone, I wish I had spent more time at           make a positive impact.
symptoms, she would always make sure            home, with her. I think that guilt is why          “It has been a privilege
we were okay.                                   it took me so long to get involved in           to meet so many inspiring
   “After a winter holiday to Switzerland,      fundraising – I just wasn’t ready before.       people along the way, and
where Dad was working at the time,              Last year, I decided I wanted to do             I have been overwhelmed
her symptoms got dramatically worse. I          something positive and fundraise for the        by the tremendous
remember the first time she texted and          MND Association. I also wanted to show          support, generosity and
asked me to pick up the boys from nursery,      my siblings that it is okay to talk about       encouragement from my
following a fall. This soon became a regular    it and that we can help others going            family, friends, colleagues and
thing, and nursery pick-ups became part         through what we went through.                   the MND community. Having
of my day-to-day routine.                                                                       got to know so many wonderful
                                                 “No matter how tough these runs
   “Dad was working away, so I became her                                                       people who work tirelessly to make a
main carer, looking after her, my siblings       may be, the challenges Mum                     difference, it did not take long before I
and making sure everything was okay at           faced living with MND were far                 wanted to get more involved and joined
home. Whether it was getting the food            greater. With every kilometre I run,           the incredibly dedicated South Yorkshire
shopping, or doing housework, I was trying                                                      branch as a volunteer. In fact, joining fellow
                                                 I think of her.”
to step-up as much as I could. It must have                                                     branch fundraisers for the Sheffield Half
been so hard on her. She always wanted            “Fundraising has actually helped. Being       Marathon in April was one of my most
to have a big family and now couldn’t look      able to do something and see so many            memorable runs – it was an emotional
after them. It was heart-breaking.              people out there who dedicate their lives       day, but we had an amazing team and the
   “Mum was in hospital when we were all        to helping others makes you realise you         support along the route was superb!
told to get there as fast as we could. That     are not alone in this, and that there is hope      “Both, fundraising and volunteering have
is when my Mum and Dad were told it was         that one day a cure will be found.              been hugely rewarding and being able to
likely to be MND. We were always hopeful          “I always hated running, but I was talked     support others affected by this cruel disease
she would get better, that we would be          into doing a 5k last year. After somehow        has helped me try to cope with the loss of
one of the miracle stories you read about.      managing to cross the finish line, I            my Mum. I know she would be proud, and I
   “Looking back, I wish I could have done      started to develop an idea to set myself a      will continue fundraising and volunteering
more, but we just didn’t really know what       challenge – 100k for MND Association. I am      in her name.”

12    www.mndassociation.org
yourstories

		www.mndassociation.org   13
Revisiting lithium trials highlights
importance of precision medicine

M
            ND is one of the most difficult                                                     with the UNC13A variation, 70% of people
            neurological diseases to             participants was conducted, the positive       who were given lithium survived for 12
            diagnose and treat. This is mainly   effect was no longer there.                    months or longer, compared to only 40%
due to its complexity, as the cause of              “Together with Dr Michael van Es we         of those given placebo. No beneficial
the disease is likely to be a combination        hypothesised that this might be due to an      effect was found for people with the
of genetic, environmental and lifestyle          imbalance in the distribution of genes in      C9orf72 gene.
factors. Finding drugs to treat MND              the different treatment groups in the trial.      “The survival effects of the genes were
effectively is therefore based on first          To clarify, we know that several genes can     not a surprising finding and confirmed
investigating the disease mechanisms             cause a more aggressive MND subtype;           earlier reports. However, the finding
– that is, the changes in our bodies that        what if, by chance, all aggressive genetic     that the treatment effect depended on
occur at the cellular level and cause            subtypes are randomised to the placebo         genotype was very surprising. We were
motor neurones to die. Treatments for            arm? This could lead to a false-positive       quite sceptical at first, because we only
MND are now being developed based                result (that is, finding a beneficial effect   re-analysed the Dutch lithium trial.
on these biological changes that happen          where there isn’t one). Subsequently, when     Therefore, we decided to contact our
in people living with the disease. But a         the trial is repeated in a larger number of    Italian and British colleagues to confirm
recent paper, published in the journal           people, imbalances due to randomisation        our findings. The process of matching the
Neurology, has the researchers thinking          disappear and the treatment seems no           genetic information with the clinical trial
that we should be looking even deeper            longer effective.                              datasets was quite challenging, which is
into the disease characteristics.                 “There is more and more                       why this follow-up study took almost two
   The paper looked back at data from                                                           years to complete.”
a few clinical trials investigating lithium
                                                  evidence that MND cannot be
                                                                                                   The impact of this paper was significant,
carbonate as a potential treatment for MND        seen as one single disease.                   and not only for the new-found hope for
back in 2011. While these studies showed          There are many different MND                  lithium in MND. It is now even clearer that
that lithium didn’t appear to have any            subtypes, each with its own                   clinical trials could benefit from looking at
benefit, the revised analyses looked into the                                                   specific genetic subtypes when looking
treatment effects on specific subgroups of
                                                  variation in disease processes.”
                                                                                                for a treatment effect. The editorial by
participants, based on the genetic variation        “To test this hypothesis, we started to     Armon and Hardiman (Neurology,
they were carrying. Dr Ruben van Eijk of         match DNA profiles with clinical trial data.   vol 89, no.19), accompanying the paper,
University Medical Centre Utrecht in the         We chose two genes that were known             concluded: “Genomic profiling remains
Netherlands, who is the lead author of the       at the time to be associated with a more       in its infancy in ALS. However, the work
paper, commented on the development              aggressive MND subtype and that are            of van Eijk et al. marks the end of the
and findings of the study:                       relatively common among people with            beginning. The novel insights open a new
   “In MND there are many small Phase 2          MND: C9orf72 and UNC13A.”                      chapter and provide new impetus to the
clinical trials that show positive results,         The re-analysis of the study found          field in its search for a cure.”
however, when a larger trial is conducted,       that, while the lifetime expectancy of            “There is more and more evidence that
the treatment is, frustratingly, found to        people with the UNC13A gene variation          MND cannot be seen as one single disease.
be ineffective. A well-known example is          is markedly shorter than in other MND          There are many different MND subtypes,
Dexpramipexole, which seemed beneficial          genetic subtypes, lithium only showed          each with its own variation in disease
in the exploratory Phase 2, but when the         positive effect on survival in this group of   processes. It is therefore unlikely that one
confirmatory Phase 3 trial with nearly 1,000     participants. On average, of those people      treatment will be able to treat MND as a

14    www.mndassociation.org
“Being part of the MND community,
                                                      I have realised my true calling.”
                                                      This is the first of a series of interviews with our PhD researchers, following
                                                      the Thumb Print readership survey where you asked for more research news.

                                                      A
                                                              mit K. Chouhan is a PhD student
                                                              at the University of St Andrews.
                                                              Under the supervision of Dr Gareth
                                                      Miles, he is using human stem cells to
                                                      understand what makes motor neurones
                                                      sick and die early in MND.
                                                         “My PhD research project aims to
                                                      decipher disease mechanisms (the
                                                      biological processes that happen in the
                                                      body, causing a disease to develop),
                                                      which are important for the design of
                                                      new treatment strategies for MND. I am
                                                      doing this by using induced pluripotent
                                                      stem cell (iPSC)-based technology, which
                                                      allows us to reprogramme skin cells into
                                  Dr Ruben van Eijk   motor neurones. This enables us to study
                                                      human motor neurones and other cell
whole. Genetics may help to determine                                                               Amit K. Chouhan
                                                      types produced from iPSCs of people
which disease pathways are present
                                                      with MND in laboratories.                     of human iPSC-derived motor neurones
in patients, and help clinical trials to
determine the pathway the experimental                 “I have realised my true calling             and astrocytes as a robust platform for
treatment is most effective for – this is              which is to make a difference in             screening drugs.
called personalised, or precision medicine.                                                            “In December 2017, I attended the
                                                       the lives of people with various
In oncology, there are many examples of                                                             28th International Symposium on ALS/
                                                       brain diseases by utilising                  MND in Boston, where I presented a
genetic interactions with treatment, with
the most recent example in melanoma                    my scientific knowledge and                  scientific poster called Functional maturity
(BRAF genotype). Our results are a step                training.”                                   of motor neurones derived from control
towards precision medicine in MND.”                                                                 and ALS patient iPSCs is affected by human
                                                         “Specifically, I am using iPSC derived     iPSC derived astrocytes. The Symposium
                                                      motor neurones and specialised
So what does this mean for                            supporting cells called astrocytes,
                                                                                                    is very important as it brings together
                                                                                                    clinicians and basic scientists working
lithium and its potential to                          to investigate changes in neuronal            on MND under one roof. Presenting my
treat MND?                                            excitability (that is, changes in the way     work at this conference enabled me to
“Despite similar trends being seen in all             motor neurones convert the signals            get feedback on how to improve and
three individual lithium trials, our results          they receive into action potentials – the     advance my research from world leaders
may still be a false-positive. This is primarily      electrical signals necessary to control       in the field. To further refine my research
because the analysis was not planned                  muscles). Using long-term co-cultures         work for developing drug screening
before the clinical trials and the overall            of these cells, we have discovered that       methods, inputs from clinicians who
number of participants is still quite small.          astrocytes derived from skin cells of         interact regularly with people with
We are therefore planning a new lithium               patients cause dysfunction in motor           MND was immensely important. This
trial to be conducted exclusively in people           neurones from people with MND and             conference also provided me with an
with the UNC13A variation.                            from healthy controls. This dysfunction is    opportunity to network with my peers in
   “Approximately 140 participants would              characterised by progressive loss of action   the field and establish new collaborations
be required to confirm our findings.                  potential output (reduced excitability)       to further advance my research.
However, as only 12% – 19% of people with             due to loss of ionic currents.                   “After completing my PhD studies,
MND are carriers of this gene, we would                  “I am currently investigating which        I plan on using my knowledge and
need to genotype over 1,000 patients. With            ion channels (‘tunnels’ in cell membrane      experience to develop new platforms
around 400-500 newly diagnosed cases                  allowing flow of ions in and out of a cell)   for drug screening, which will further
per year in the Netherlands, the trial, hoped         are responsible for reduced excitability      facilitate drug discovery processes for
to start this year, will be held in multiple          of motor neurones. These channels             MND and other neurological disorders.
European countries.“                                  could then serve as potential targets for     Being a part of the MND community, I
                                                      developing novel treatment options for        have realised my true calling, which is to
Please note that genetic testing for the              MND. As well as advancing understanding       make a difference in the lives of people
UNC13A gene is not currently available                of the disease mechanisms, my work has        with various brain diseases by utilising my
on the NHS.                                           highlighted the potential for co-cultures     scientific knowledge and training.”

                                                                                                    		www.mndassociation.org                15
Hints and tips “I wanted to see my baby
                                      achieve his childhood dream.”
I
 N response to our Thumb Print reader
    survey we asked what you would like
    to see in the magazine. A number         From hoists to passing-out parades our grants are as
 of you asked for a ‘readers tips’ section   individual as the people we are here to support.
 where readers send in what items they

                                             L
 have found useful or tips to help make           orraine Farrell was diagnosed with
 things more manageable.                          MND two years ago, leaving her
     Dena’s husband Sam has MND and               unable to walk and requiring 24 hour
 found it helpful to make a CD that          care. When her son Connah, completed
 they can relax to, as a way to reduce       his training to join the Royal Navy,
 stress and feel able to face the day’s      Lorraine feared she would miss his special
 challenges. Dena said: “The fatigue         moment and that the trip from her home
 of 24 hour care, sapped us. We didn’t       in the Wirral, to the passing out parade in
 want to lose our faith, so one day I        Plymouth, would be impossible to make.
 put some healing verses on a CD. It         Following a call to Lorraine’s local group
 reassured my husband that he could          in Wirral, the MND Association provided
 hear my voice at any time.                  funding and support so that Lorraine
     “The verses were from the Bible.        could see her son achieve his dream of
 Healing comes in so many ways. For          joining the Navy.
 me, listening to the verses, restored          Lorraine said: “MND has had a huge effect
 my peace, my joy, and it reminded           on me and my family. I have gone from
 me, we are not alone on this journey.       a busy and active life, working with and        Lorraine and son Connah Farrell
 It reminded me that so many people          riding horses, to being totally incapacitated
 have challenges. Listening to the           in just two short years. It has brought a       ensure I was comfortable for the trip. It also
 healing verses, helped us through our       great strain on the family but my husband,      paid for our carers to travel with us so my
 lowest days and nights.”                    Charlie, ensures I get everything I need and    24 hour care was unbroken.
     If you have any tips or pieces of       our care team is fantastic.                        “I can’t put into words what this support
 equipment that have helped you,                “We have benefited from support from         has meant to my family. I have been very ill
 please share them with others by            the MND Association, especially the Wirral      over the last few months and I desperately
 emailing editor@mndassociation.org          MND Group who are always willing to chat. I     wanted to see my baby achieve his
                                             was desperate to see Connah at the passing      childhood dream. We are a military family
                                             out parade and be part of his special day.      and this is a huge moment for all of us.
 Communication                               But with my 24 hour care needs, I couldn’t
                                             see how we could ever make the trip. The
                                                                                                “Connah has done Charlie and myself
                                                                                             proud by excelling in his training, not
 Access Symbol –                             logistics were so complex, made even worse      only becoming the class leader, but also
 share your views                            by being admitted to hospital just days
                                             before the parade.
                                                                                             winning the Ganges Trophy awarded
                                                                                             for the best team performance during
                                                “Charlie said it was worth exploring         training. Thanks to the MND Association,
                                             and called the group to ask if there was        and especially the Wirral Group, we
                                             a branch in Plymouth who could help us          were able to be there to celebrate his
                                             find a specialist place to stay. They told us   achievements.”

 T
       HE Royal College of Speech            about the grants the Association provides
       Therapists, Communication             and encouraged us to apply.                       If you would like more information
       Matters, the MND Association             “The process was very easy. We were            on our grants contact MND Connect
 and the Stroke Association are              just asked to supply costings for travel and      helpline: 0808 802 6262 or email
 developing a nationally recognised          accommodation. The grant helped us to             mndconnect@mndassociation.org
 communication access symbol,                hire a bigger disabled access vehicle to
 similar to the generic wheelchair
 and hearing symbol that is accepted
 internationally. It would be shown in
 shops and businesses where trained
 staff will be able to assist people with
 communication difficulties.
    We want to get the views of people
 affected by communication difficulties
 about the symbol they would like to
 see. To take part in the survey visit
 www.mndassociation.org/symbol

16   www.mndassociation.org
“He can’t talk, but I learnt so
much about my Grandad.”
W
            HEN 14-year-old Emily Boulton         “I also learnt more about my Grandad
            had to decide what to do for her   in ways that I wouldn’t usually as he no
            Duke of Edinburgh Bronze award     longer has the ability to talk and tell stories.
she knew immediately what she wanted           By me visiting him, it has made him feel
to do. Having seen how MND has left her        less isolated and lonely. It also gave him
grandfather John Boulton, unable to hold a     something to look forward to. I thoroughly
book, she decided to visit him on a weekly     enjoyed the experience.”
basis to read to him. She has now read
several books, including one about his
                                                 Our age specific information for
hometown Ludlow, during his childhood.
                                                 children and young people is designed
Through reading, Emily and John have
                                                 to help them understand more about
been able to look back and reflect over
                                                 MND. Finding the right information,
his past, including his time doing National
                                                 support and services immediately after
Service, and the countries he visited.
                                                 diagnosis can help the whole family.
   Emily said: “As well as reading to
Grandad I would also massage his muscles         If you would like to access information
so that he didn’t feel uncomfortable and         and support visit our website
in as much pain due to this awful disease.       www.mndassociation.org/ypinfo
I learnt about how much MND affects              or contact 0808 802 6262 or
people and what they have to go through          youngconnect@mndassociation.org
in order to live with this disease.                                                               Emily and her Grandad John Boulton

Information updates

 Making the most             Carers hub: following       End of life – a guide         Information sheet               Information sheet
 of life with MND:           work on our About           for people with motor         10A – Benefits and              10E – Work and MND:
 our new A5 booklet          MND web pages, our          neurone disease: our          entitlements: this              we have updated our
 explores ways to adapt      hub for carers, family      award-winning guide           popular sheet has               guidance for people
 to life with MND, yet       and children has also       has been revised and          been revised and                with MND and carers,
 maintain interests.         been redeveloped.           updated. This resource        condensed to make it            on decision making
 Feature pages introduce     Finding the information     is helping to build a         easier to reference. It         about continuing or
 people living with MND      you need should now         bridge between families       now includes guidance           leaving employment,
 and their carers, who       be easier, with simple      and professionals,            about our new Benefits          and your rights.
 share their approaches      drop-down selections.       during difficult              Advice Service.
 to life, hobbies and        Explore the hub at:         conversations about
 experiences.                www.mndassociation.         end of life decision
 See page 8 and 9.           org/carers                  making. It now includes
                                                         references to the NICE
                                                         guideline on MND.

  You can download our resources at: www.mndassociation.org/publications
  or order printed copies from our MND Connect helpline: 0808 802 6262, mndconnect@mndassociation.org

                                                                                                  		www.mndassociation.org                17
Specialist posts to support people with MND
Zoe-Anne Gaymes and Liz Garrood

W
           E know the difference               nurse specialist. Award-winning broadcaster         “Once a patient has been referred to me,
           specialist roles can make           the late Stephen Rhodes, was highly              I will contact their GP to request a copy of
           supporting people with MND.         instrumental in the campaign and as              their medication and a clinical summary,
So, in partnership with the NHS, we are        Campaigns Contact for the Luton and              along with any clinics they attend. I then
establishing some new roles in Bedford         South Beds Branch, helped to persuade the        visit the patient. I am always very honest
and Luton. These posts will help reduce        Bedfordshire CCG to joint-fund the post.         with my patients and when we talk about
unplanned hospital admissions and enable                                                        the support they would like, I outline what
people to stay at home with their loved                                                         is realistic.
ones for longer.                                                                                   “My work helps to simplify things for both
   Zoe-Anne Gaymes, Rare Neurological                                                           patients and professionals, who benefit
Conditions Clinical Nurse Specialist and Liz                                                    from a co-ordinated service, with regular
Garrood, Specialist Neurological                                                                communication. This in turn empowers
Co-ordinator have been recruited to two of                                                      patients, allowing them control to make
these new posts and speak to Thumb Print                                                        informed choices about their care.”
about how they are improving the care                                                              Services in both areas are stretched, but
people with MND receive.                                                                        having seen the difference these roles can
   Zoe-Anne is based at St John’s Hospice                                                       make, Liz is positive about the future. “When
in Bedfordshire and supports people with                                                        I was employed as a specialist neurological
MND across the county. Zoe said: “Specialist                                                    nurse in Hertfordshire, we set up a similar
nurses are especially valuable in complex                                                       service that demonstrated improved access
cases. I support people in their own homes,                                                     to timely care and enhanced quality of life
as well as working with local healthcare                                                        for people with MND and their carers. It also
                                               Stephen Rhodes
professionals to improve their knowledge                                                        reduced unplanned hospital admissions
of MND.                                            Zoe continues: “I am the first point of      saving the CCG £500,000 a year.”
   “Previously people with rare neurological   contact for patients, so they need just one
conditions in this area would have to see      number to call. Being based at the hospice,         Last year we provided funding
many different healthcare professionals in     it is also a good way to introduce patients         to establish three new specialist
many different settings, but my role now       to a hospice setting, without them feeling          practitioner posts in Bedfordshire,
ensures a co-ordinated and joined-up           that hospice means end of life care.”               Bath and North East Somerset and
approach to care.”                                 Liz Garrood’s role covers Luton and is          Swindon. We also part-funded a
   Zoe-Anne’s role was the result of a         based at Keech Hospice Care. Liz said: “I           Neuropsychologist in Middlesbrough
campaign by the MND Association                am with the patient on their journey from           to focus on behaviour and cognitive
for Bedfordshire Clinical Commission           diagnosis, right up until the very end. I am        function. Six further roles are
Group (CCG) to joint-fund with the MND         the patient’s advocate and I provide them           currently being rolled out.
Association, a rare neurological conditions    with a single point of contact for their care.

18     www.mndassociation.org
MND Register now launched
W
           hilst genetics continue to give                                                        Kirsten Kelly, Research Programmes
           us an insight into the disease,                                                     and Partnerships Manager at the MND
           the causes of MND are likely                                                        Association said: “There are many small
to involve a complex combination of                                                            contributory factors that may combine
genetic predisposition and environmental                                                       together to tip the balance towards a
factors. In a previous edition of Thumb                                                        person developing the disease. Our MND
Print we reported on the development                                                           Register is a unique opportunity to help us
of a register of people living with MND in                                                     collect information from people living with
England, Wales and Northern Ireland. The       and Northern Ireland. People with MND           MND, in a central place for researchers
MND Register is a research study funded        may be invited to take part during an           to be able to find out what these small
by the MND Association and led jointly         appointment at their MND clinic. They are       contributory factors may be.
by Professor Ammar Al-Chalabi at King’s        also able to take part online via the project      “We hope that as many people with MND
College London and by Professor Kevin          website: mndregister.ac.uk                      as possible are able to sign up. This can
Talbot at Oxford University.                      The aim is to collect information about      either be through their care centre, clinic or
                                               every person with MND. The information          direct via the website. The MND Register will
 “The MND Register is a unique                 collected can be used to learn how a            be an invaluable tool to help us understand
 opportunity to help us collect                person is affected by MND, how the              more about MND and help us answer the
 information from people living                condition progresses and how many               question, what causes MND?
 with MND in a central place for               people have MND in different areas. This
                                               will allow research into the causes and          Anyone who has been diagnosed
 researchers.”                                 characteristics of MND and help inform           with MND and who lives in England,
  Identification of environmental factors      care planning.                                   Wales or Northern Ireland is
has so far been slow, with little definitive      The Register will connect people with         encouraged to take part in the study
progress to date. However, now the             MND to researchers, including those              and share their information.
register is up and running, researchers        conducting clinical trials, and will               Thank you to everyone who have
will be able to explore the environmental      provide valuable information to guide            already or will submit their details
causes of MND in more detail.                  the future development of care services.         in the future and help us to gain
  The register consists of a database and      MND is relatively rare, so it is important to    knowledge about MND. Take part
website that will hold information on          collect information in as complete a way         online at www.mndregister.ac.uk
every person with MND in England, Wales        as possible.

                                                                                               		www.mndassociation.org                  19
You can also read