SHA Newsletter - Issue 57 - Scottish Huntington's Association

Fantastic Picanto to be won
500 Plus Club Winners
20th scottish
anniversary
Thanks to all our new members for joining the club.
Congratulations to our winners from the regions below who won
prizes of £100, £50 and two of £25.
Feb
Mar
Apr
May
June
July
1 st prize 2 nd prize 3 rd prize 4 th prize
Glasgow
Dundee
Edinburgh
Carlisle
Fife
Lanarkshire
Tayside
Lanarkshire
Lothian
Glenrothes
Dunfermline
Abd/nshire
Moray
Tayside
Banffshire
Moray
Kirkcaldy
E Dunbarton
huntington’s
association
Raffle ticket you won’t believe what
you can win!!!
We have teamed up with Phoenix Motown
to raffle a car, a Kia Picanto. This raffle
will drawn at the family conference, at the
Gala dinner, on Saturday, 07 November.
You’ll find a book of 5 raffle tickets
attached here. Please show your support
by selling the book of 5 raffle tickets and
return the stubs and a cheque for £25 to
me, Alison. Cheques should be made
payable to Scottish Huntington’s
Association, and sent to Scottish
Huntington’s Association, Suite 135,
Linwood Road, Paisley PA3 3AT.
Please remember that the raffle tickets will
be available throughout the year, so if you
need some more, please don’t hesitate to
contact me.
Dundee
Glasgow
Lanarkshire
W Lothian
Banffshire
Abd/nshire
NEWS Autumn
2009
Issue 57
The organization takes terminally ill children from the United
Kingdom and other parts of Europe to Central Florida to enjoy
the area's theme parks. It was on that trip that Bobby met
Michael and Barbara Hurley, creating a lifelong bond with the
couple, who served as Dreamflight volunteers. "I was a second
father to him," said Michael Hurley, 62, a carpenter.
The Hurleys this week shared a tearful reunion with Bobby's
mother, Sharon McWhirter, and were joined by city officials and
law-enforcement officers to pay tribute to Bobby during the
tree-planting ceremony Monday. Sharon McWhirter, who is
visiting Central Florida for the first time since Bobby's death,
shared the experience with her brother Robert and her sister
Aileen. As she wiped back tears, McWhirter acknowledged the
influence about two dozen people who attended the
ceremony had on her son's life. "It's very overwhelming," said
McWhirter, 38.
Mount Dora City Manager Michael Quinn presented McWhirter
with a city proclamation in dedication of Bobby's life. The city
has a unique connection with McWhirter's country - its sister
city is a Scottish city, Forres. Each year, the cities host a studentexchange
program.
The Lake city's relationship with Bobby and his family has ties
even closer. Many city and county law-enforcement officials
met Bobby when he visited Florida a second time in 2002. He
association
20th scottish
anniversary
Bobby McWhirter’s
Memorial in
America
huntington’s
MOUNT DORA - As the giggling sounds of children playing breeze through the air at Gilbert
Park, the spirit of a young boy from Scotland will stay alive.
This week, the family and close friends of Bobby McWhirter celebrated the boy's life at the
park where a tree will grow in his memory. Bobby died two years ago at age 15 from a
degenerative and terminal brain disorder called juvenile Huntington's disease. But before
his death, he touched the lives of a Eustis couple who lived thousands of miles away from
his hometown of Ayrshire, Scotland. He met them on an eight-day trip planned by a British
organization called Dreamflight in 2000.
dreamed of being a police officer, so Mount Dora officers and
Lake deputies helped make that dream come true - if only for a
day. They dressed him in a camouflage helmet and sheriff's
jacket and showed him how to turn on the lights and siren of a
patrol car.
It was a unique opportunity for officers and deputies to focus
on children, said Lake Sheriff Gary Borders, who attended this
week's ceremony with four uniformed deputies. "It was an
honor for us to be able to do that," Borders said of the chance to
play with Bobby. "And it's an honor to be invited here today."
The Mount Dora parks and recreation department presented
the McWhirter family with a plaque in Bobby's memory. His
name sits below the oak tree planted for him. And although the
pain of losing her only son still holds strong, McWhirter said she
was moved by the extended family given to her through her
son's experiences.
"He's a very special young man," McWhirter said of her son.
"Through him, I met some very wonderful people."
Christine Show can be reached at 352-742-5917,
cshow@orlandosentinel.com or on Twitter @showc.
Used with permission of the Orlando Sentinel,
copyright 2009

Matters from the Chair
Philip Fox
th
Our last meeting of the board on June 7 was, as
usual, packed full of agenda items with our
customary big focus being on finances. We remain
hugely indebted to Jim Lochery, our treasurer, who
along with John Eden, skilfully work out effective
budgets almost on a daily basis, and are positively
addressing the so called ‘deficit-creep’ (the slowly
widening gap between income and expenditure)
affecting most of our regions. In essence, their
work ensures that the Association remains in a
comparatively healthy state in today’s difficult
financial climate.
Other items taking our attention included :-
• The situation regarding our CEO position in
the light of Marie McGill’s secondment and recent
acceptance of the fulltime post running the Single
Gene Complex Disability project. Since the time of
Marie’s secondment John Eden has magnificently
stepped into the position of ‘acting CEO’, moving
the Association forward with new ideas and
perspectives, exercising gentle but firm management
skills and showing great awareness of the
th
significance of this - the 20 year of the
Association’s existence. It has also been a real
pleasure to work closely with him in understanding
and coordinating effective governance issues with
the board - long may it continue! In the next few
weeks we will, as appropriate, be advertising both
the CEO’s post and that of the Lanarkshire
‘Palliative Care Advisor’ - following Cathy Corr’s
departure from the latter.
th
• Talking of 20 year celebrations and
fundraising - feverish activity has been going on -
thanks to many people - especially of course -
Alison Hardie and Jane Knox and full details are
given elsewhere in this ‘What’s On’. The benefits of
this year’s SFA sponsorship are apparent and I
was able to experience for myself something of the
effect at the ‘Footballer’s Fashion Fling’. Not being
a football fan nor a fashion guru meant I was
amazingly educated at a whirlwind of an evening!
Well done all the staff and volunteers present at
Glasgow’s Radisson Hotel.
• Continuing the theme of 20 year celebrations
mention must be made of Ann Carruthers - who,
having been with the Association from the start,
merits our sincerest thanks for her focus and
commitment throughout its history. A gift was
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presented and our
appreciation minuted at the
board meeting. In recognition
of good ‘governance’ practice
which advises against the
position of Company Secretary being a company
employee, Ann Carruthers will continue to be
Company Secretary, until that post is occupied by
one of the volunteer board members, still to be
appointed.
• We were pleased to record that the M & As -
as amended, are now in a state for ratification by
Family members and a special meeting will be
fixed for that purpose in the near future.
• Finally, I nearly went to the U2 concert at
Hampden in August and certainly was treated to
some of the mega-amplified music. The reason?
‘Roon the kitchen table’ became - ‘Roon the
football stadium executive box table’ for an
afternoon, when with Jim Lochery, we were able to
have heart to heart discussions with family
members about the current state of the Association
- what’s good, bad, open for improvement, and
where we should go in the future. The concept of
board and/or senior staff members meeting for
‘intimate service user consultation’ had been
discussed at board level and has finally come
about in several regions to date. All have appeared
to be highly successful as a means of focussing on
the fundamental issues that are the very reason for
the Association’s existence.
Philip Fox
Chief Executive Report 3
Management Reports 4
IHA Conference Canada 5
Fundraising Promotions 6
Fundraising 7-12
Research 13
Linlathan Neurodisability Centre 14 & 15
Chief Executive Report
John Eden
Incredibly, a year has passed since I wrote my first year. It’s been fantastic to
piece for our newsletter as Acting CEO. Reflecting work with families and
on the year, it has been a genuine pleasure colleagues in the other
working in the role. The possibility of helping to Associations. There is a
make the world a little better and to touch the lives real sense of being part of
of others in a positive way has always been the a big family and I believe
main driving force in my life and there are few that this Alliance will be a significant force for
better opportunities to do that than in this role. raising awareness about HD at a national level as
Over the year I have watched the organization well as sharing our knowledge and resources to
change and grow. It has been exciting to see the the benefit of families living all over the U.K. &
youth service go from strength to strength and the Ireland. It has also been a joy to watch our HD
summer camp this year brought home just how services continue to provide the high quality of
important it is that we support young people service that we have come to expect.
whose lives have been touched by HD. Our
relationship with the Scottish Football Association
has paid dividends. There remains an incredible
need to raise awareness about HD and to
challenge the stigma that surrounds the condition
and the support of the SFA has been vital in
enabling this to happen during 2009. I am also
delighted about the formation of the U.K & Ireland
Huntington’s Alliance which launched in June this
But what makes this job really worthwhile is the
opportunity to meet families living with HD. ‘Roon
the Kitchen Table’ has really been inspirational and
I have taken away a real sense that while the SHA
has achieved a great deal, there is so much more
to do and not just talking with, but feeling the
challenges that many families live with all the
motivation that I and the staff who support you will
ever need.
We are delighted to launch our new website at
www.hdscotland.org. It is packed with the latest
news, information and resources and a brand
new shop.
Sarah Winckless will be updating her blog on a
regular basis letting us know how her new career
is progressing and how she is raising awareness
of HD all over the UK.
Our new calendar of events will advertise
fundraising and other events taking place
throughout Scotland. If you are organising an
event please send the details to
alison.hardie@hdscotland.org we will add it to
the calendar.
In the Fundraising & Donations section you will
find details on the many ways you can support
the charity. Just click on Ways of Supporting Us
to find out more.
Our new shop has a range of literature and
merchandise to purchase on-line. Our Christmas
cards have just been added and we also have
Christmas wrapping paper available this year.
SHA branded trolley coin keyrings are the latest
addition to our merchandise range and can be
purchased from the shop.
Thank you to the following trusts who made the
project possible:
Miss Agnes H Hunter’s Trust
The Cruden Foundation Ltd.
The Rozelle Trust
The Yorkshire & Clydesdale Foundation
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Service Development Manager North/East
Sue Beevers
Highlands: In June for HD awareness week, Gordon Tayside: Alison and Lindsey
and Christine held an information stand at the Centre for also make up the Tayside
Health Science, near Raigmore Hospital. This gave service at present, covering
health professionals and passing public the opportunity work with new referrals and
to ask questions about HD and the service. We hope to where urgent assistance is
repeat with similar events throughout the year. Mary required. Paula McFadyen, the
Scanlon, MSP and Shadow Cabinet Secretary for Health permanent advisor, plans to return at the end of October
paid a visit in June in order to find out more about the from maternity leave when a fulltime service will be
level of service in the Highlands. Further requests for resumed. Tayside have also received an extremely
training by Health and Social care professionals are positive evaluation result.
being received which is always good news as this is one Fife: In Fife HD, the team (Jean, Nicola and Jillian) were
of the ways that we can help to influence positively very busy for HD awareness week which included a
standards of care. radio interview for Nicola on the local station, Kingdom
Grampian: A huge welcome to Annette Le Saout, our FM and also a bit of ‘Fun raising’ with the family branch.
new Project manager, who commenced at the end of The service continues to be busy, not least with the
April. I know from your feedback that Annette has made monthly management clinic and a planned research
an extremely positive impact in her new role. She has project.
already managed to cover all corners of Grampian with Lothian: By now, many of you will have had the
her introductions as well as providing much needed opportunity to meet our new Project Manager, Carrie Ho
support. Annette completes our small team in the and benefitted from her support. Carrie has been
Aberdeen office along with Anabel Smith, working very hard and has also introduced access to
Admin/Resource worker and Karen Keenan, Youth initiatives for Lothian families such as the Community
Project Manager who we also welcome back from Access Programme with Edinburgh Leisure and Get up
maternity leave. & Go. A huge welcome to Libby Campbell, Admin/
Angus: In Angus the service is running as efficiently as Resource worker. Libby brings with her a wealth of
ever and this has been reinforced by the results of our experience and I know will be an enormous support to
recent 3 yearly families and professional survey. Well Carrie in the office.
done to Alison on the quality of her work, very ably
assisted by Lindsey.
Operations Manager South/West
Karen Sutherland
Who can believe that a whole year has passed since I then it will be full steam ahead
wrote my first report for What’s On as Operation’s to get the service back up and
Manager. It certainly has been the most challenging but running to its full potential.
rewarding year. We have had many staff changes this Marta has been keeping things
year in the SW Team. However I am glad to report that ticking over nicely ensuring all
our new staff are settling in well and are a great asset to enquires have been dealt with in
the team. the absence of a Project
Ayrshire Eileen has been very busy coping with the Manager. Watch this space.
many challenges of the service in particular those arising Glasgow: Joanne Miller our newest recruit in Glasgow,
st
due to the high number of young people requiring support started on the 1 of June. She feels like she has been
from the service. She has taken it all in her stride and here forever. Joanne assures me that she means this in
with the assistance of Roberta has managed to maintain a good sense, as she has been made to feel welcome
a high level of support, training and education to and already is a very valued member of the team. She
individual’s with HD and to the professional team’s who has taken to HD like the proverbial duck to water and has
th
support them. The 4 Annual Ayrshire Family really got her head down and got on with it. She is
Conference was very successful with over 30 family managing her own caseload and has already established
members attending. The Audit of the HD management very good relationships with all other professionals within
clinic is due to be completed in early Autumn. So far the the SHA and within the community in which she works.
results are looking favourable. Glasgow’s next challenge is to organise and facilitate a
Lanarkshire: Sadly Cathy left the service in June to go new education training programme to the wider
and take up post with NHS Lanarkshire as a Practice community, including health and social care
Development Facilitator. We were unsuccessful in our professionals. It is hoped to be in place early next year.
first attempt to recruit a suitable replacement for Cathy,
however interviews are due to take place soon. It is Best regards and kind wishes from all the SW Team.
hoped that the post will be filled by the end of October,
4
IHA Conference Report
World Congress, Westin Bay Hotel, Vancouver 11-15
September 2009.
Three SHA staff members attended the conference this year.
Karen Sutherland, Jillian Foster and Kirsten Walker. It
commenced on Saturday with the IHA Ariel and Ralph Walker
Day. It was facilitated by IHA and the Huntington’s Society of
Canada. The session kicked off with opening remarks from
the president of IHA and the chair of HSC. A very emotional
speech was made by Ariel Walker, wife of Ralf Walker, they
co-founded the HCS in 1973. The organisation have been
supporting HD families for 35 years now and Rallph was also
one of the co-founders of the IHA and was a long time leader
in the movement. Sadly he passed away earlier this year. A
great loss to his wife, his many friends and associates around
the world.
There were a series of workshops one of which our very own
Kirsten Walker helped facilitate. “Meeting the needs of
Youth”. A fantastic opportunity to liaise and network with
young people all over the world. Other sessions we attended
were “Ethical issues for families”, “Slowing down the disease
through physical and cognitive activities” and “Staying strong
through HD”. A message board is being launched by the HSC
for which I have registered. Further information can be found
by logging on to www.huntingtonsociety.ca or
www.info@huntingtonsociety.ca.
The theme statement for this year’s conference was
“Together we can Triumph HD”. Welcome and opening
remarks were made by Michael Hayden; world famous
researcher who was nominated for Genetist of the year award
2009. He stated that over 51 countries were now supporting
families with HD worldwide and that over 700 delegate had
st
registered for this year’s conference. The 1 plenary session
got off to a great start with 13year old Katy Delargie who
spoke about the impact on her family since her father was
diagnosed HD positive earlier this year. Janine Fuller gave her
perspective on living with HD and how impacted on the lives of
the lesbian, gay and transsexual community who have the
same complex needs as everyone else. Thoren Young
described her journey since first speaking at the last HD
conference in Vancouver 20 year ago and described her
experiences of being on of the first to undergo in vitro testing
when trying to plan her family and how after three terminations
decided to abandon it and take her chance. She now has
three daughters. She also stated that many off the issues that
were around then are still around today and last but not least
BJ Viau gave a heart warming rendition of how he and his
family began their journey as fundraiser’s through organising a
Hoop-a-Thon after his mum was diagnosed HD positive. The
Hoop-a-Thon is now an annual event and raises thousands of
dollars every year.
The care sessions included topics such as “
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8
8
8
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Living with HD
Approaches to Symptomatic Therapy for HD
Towards a Standard of Care for HD Clinics
Improving the quality of life with HD
Young people affected by HD: strategies to form
connections
The role of families in Research
The science sessions included
Neurobiological Predictors of HD (Biomarkers)
th 8
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The Poster sessions included many abstracts too many to
mention but I must mention a few.
8 “Scotland experience of summer camps and activities
for young people living in families with HD and the
future of service provision” ( a fantastic poster by
Kirsten Walker our very own Youth Worker).
8 “21, Years, 263, Predictive test for HD, was it worth
it”? (Dr Sheila Simpson, Ninewells, Aberdeen)
8 “Enabling individual’s to have their wishes granted. A
clear concise leaflet about Power of Attorney with
case study” (Dr Sheila Simpson & Kirsty Mathieson)
8 “Risperidone Depot Reduces Motor and Cognitive
symptoms in Early Onset HD”( Dr Tim Johnston
Consultant Psychiatrist- Ayrshire)
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Post-translational Modification in HD
“Stem Cell Research”
Inflammatory and Metabolic Changes in HD
The highlights of the week from my perspective included
Alison Lasharood’s presentation on “Is it right, Is it worth it”?
Seven years experience of Pre-implantation - Genetic
Diagnosis for HD. Robert Pacifici from CHDI Foundation
discussion on “Efforts to Collaboratively Enable treatments
for HD” he also introduced their new web-site for researchers
called CHDI Research CrossRoads that facilitates the process
of validation and selection of targets that are worthy of
prosecution which will allow a much more effective and
efficient system that will facilitate bi-directional flow of ideas
across the HD research community. Jeff Carroll a scientist
who works with Michael Hayden researching HD gave the
most powerful presentation of the conference. He spoke about
his personal journey and how receiving a positive HD result
affected his life, he described how he went from ignorance to
knowledge and how this affected his family and his decision
making, especially when planning his family he went from not
wishing to have children to now having beautiful 2 year old
twins. ( a son and daughter). He also described his passion to
find a cure for HD as quickly as possible. His message to all
individuals with HD was to come forward and agree to take
part in clinical trail’s when they become available.
Hot topics debated throughout the week were:
Predictive Testing for HD should be offered to
Children
Mouse Studies are Critical prior to Human Drug Trials
My HD results belong only to me.
The Evening News which was hosted by Charles Sabine and
supported by science and care reporters Ed Wild and Jeff
Carroll. Was entertaining, funny and informative. The
reporters gave a very clear and concise layman’s account of
the day’s presentations.
All in all it was a very informative conference which provided
an excellent opportunity to network with HD families and
colleagues from all over the world. It is reassuring to realise
that all individual’s whose lives are affected with HD (families
and professionals alike) have the same frustration and
problems the world over but we are all working towards the
same goal. To ensure that individual’s and their carers receive
the best possible quality of life until a cure is found for HD or at
least until a drug is developed that can slow the progression of
the disease. To be part of that partnership is a very great
privilege.
5

Fundraising Promotions
Yes, its that time of year
again, countdown to
Christmas!
I hope you like our
selection of Christmas
cards again this year.
Each pack costs £5 and
contains 10 quality
Christmas cards. The
greeting inside reads
’Wishing you a very
Merry Christmas and a
Happy New Year’.
We’ve extended our
range this year to having
Christmas wrapping
paper. There is a choice
of four designs; Father
Christmas, Trees,
Garlands Wrap and
Santa Paws. Each pack
costs £2.50 and contains
4 sheets and 8 tags.
Santa Paws is a twin
pack, with 2 sheets and 4
tags of Santa Paws Silver
and Santa Paws Red.
We sold out last year,
with many orders still to
fill. So please order early
to guarantee your order
for Christmas.
Call Alison on 0141 848
0308 or log on to our
shop at
www.hdscotland.org.
Father
Christmas
Garlands
Winter Scene A Touch of Tartan
at Christmas
Christmas
Morning
Golden Forrest
Twin pack
Christmas Greetings
2009
Santa Paws
The
Nativity
Red/Silver
Fundraising
2010 Marathons
For all you sporty types out there,
would you like to take on the challenge
of a lifetime?!
We have places left for both the
London marathon and Edinburgh
marathon 2010.
The London marathon is happening on
Sunday, 25 April 2010.
The Edinburgh marathon on Sunday,
23 May 2010.
If you would like to take one of our
places please call Alison on 0141 848
0308.
Our patron, Sarah Winckless, got into
fundraising mode when she organised the
Henley Women’s Regatta.The event took
place on Saturday, 13 June 2009. Sarah
managed to raise £28,617 for the UK and
Ireland HD Alliance, the Scottish Huntington’s
Association
received
£12,000 in
total.We
would like
to offer our
sincere
thanks to
Sarah and
her friends
who put so
much effort
into getting
this event
off the
ground.
Craig McGuire ran the London Marathon
this year on Sunday, 26 April.
Craig managed to get round in
4 hours, 5 minutes and 20
seconds, a fantastic time!
He had hoped to crack the
illusive 4 hour barrier but
struggled from the 21 mile
marker. However, he’ll be
back to conquer it one day in
the future he says! I’m sure you
will Craig.
Thanks for raising the tremendous
sum of £1,047.
On the Ball with Donnelly
Sunday 25 October 2009
Citizen’s Theatre,
Glasgow
Evening starts at 7.30pm
Dougie Donnelly will be testing
the reflexes of some of Scottish
football’s leading figures as he
quizzes them at this unique
event. Will Gordon Smith,
George Burley, Terry Butcher,
and Mark McGhee be on the
ball?
Following the interviews, the
celebrity panel will be taking
questions from the audience
a fantastic opportunity for
football fans to put their
burning questions to some of
the top names in the game.
On the Ball with Donnelly will raise
vital funds for the Scottish Huntington’s
Association.
All tickets cost £15 and are available from the Citizen’s
Theatre on 0141 429 0022 or at www.citz.co.uk.
6 7

Fundraising
SFA’s Mini Highland Games
As you know the charity is one of the Scottish Football Association’s nominated charities for 2009. Not only
have we been given this honour and raised a fantastic amount of funds to date through them, but the staff
have been so committed to our cause too.
Thirty staff at the SFA had an outing on 1st August to Bridge of Allan and took part in a Mini Highland
Games, making it a sponsored event to raise money for our charity.
It was a great day with a mixture of all staff from Hampden Park, the Scottish FA, Scottish Football League,
Scottish Premier League, Scottish Youth FA, Sports Medicine Centre, Hampden Park Ltd. They took part in
7 events, walking the plank, horse shoe throwing, tossing the caber, throwing over the bar, putting the
stane, welly throwing and archery.
They had great fun, a great day out! Sandra Buchanan confirmed that £683.50 was raised! A fantastic
amount! Thanks to everyone who participated in the games from all at Scottish Huntington’s Association.
Also special thanks to Maureen Cooper, who raised funds at her retirement do. Instead of receiving gifts,
Maureen asked for donations and raised a further £200 for the charity.
Fundraising
Millport outing
SHA Ayrshire Family
Branch had their annual
outing on 31 May 2009. A
great day was had by all
attending, approximately
75 people. The weather
was marvellous.
Raffle prizes were
donations from families
and friends attending,
with the exception of the
Ayrshire branch donating
the first prize of £25.
Fife branch were given £25 out of
the raffle money and Ayrshire
branch £96.
Hopefully there will be a good
attendance at next year’s event in
2010.
A big thank you to those helpers in
the kitchen.
David McLeish ran the
Glasgow 10k on 21 June
2009. His time was 49
minutes and 53 seconds.
Great time David! Thanks
David for the £406 you
raised for the charity and
donning one of our tshirts..
David also organised a
race night on 29 August
and raised £1800 for the
charity.
Thanks again, David.
Fundraising event happening in Hamilton
Nicola Gailey and Centrine Hutton are holding a
fundraising event on Saturday, 10 October in Esporta
Health Club, Hamilton. The event will commence at
10am with a 185km bicycle ride (equivalent to cycling
from London to Lille) - taking approximately 5 hours.
Please drop by and cheer them on.
Following this there will be a family disco which promises
to be a great fun filled evening.
Tickets for the disco are priced at £15 (£5 for the under
10s) and are available from Nicola on 07792 876 305 or
Centrine on 07825 181 174. Alternatively, you can
purchase from reception at Esporta Health Club,
Hamilton. Ticket prices include a buffet and champagne
reception as well as plenty of fundraising games for both
young and old.
Millport Cycle Run
Betty Anderson and family did a cycle run around Millport on 04
May 2009 and collected the grand total of £1,115.
It was a dreadful day weather wise (rain and howling wind) but
they were all in good spirit and thoroughly enjoyed their cycle
around the island even if some of them needed oxygen by the
end!
The children were particularly great and kept the older, unfit ones
going with their encouragement (and taunts!)
We all travelled to Millport together by minibus this was kindly
paid for by uncle Hughie Anderson who is in his 70s and not up to
cycling but nevertheless wanted to do his bit and be part of the
day.
The fact that this was a family effort certainly made it
special and ensured that they had great fun!
Thanks to you and your family Betty for all of your
support, and for the photographs, its always good
to see what’s going on out there.
Betty and her family are also planning to do even
more fundraising, which includes bag packing at their
local supermarkets.
8 9

Fundraising
Footballers Fashion Fling
Scottish football stars showcased their fancy
footwork on the catwalk to raise funds for the
charity. An impressive turnout saw football
fans showing their support by swapping their
seats in the stands for those in the front row.
The players, including Jackie McNamara,
Allan Russell, Craig Dargo and Kevin Twaddle
were joined by football legend Frank
McAvennie at the event at the Radisson
hotel in Glasgow.
For those of you who managed to come
along, we hope you enjoyed the
evening. Those who didn’t make it, we
hope you enjoy some of the
photographs of the night.
We would like to convey our sincere
thanks to Gina McKie of Clyde 1 who
hosted the evening. She was
fabulous and looked absolutely
stunning.
Of course, we would never have been able to
do it without our footballers. They were really
up for it and seemed to enjoy their stint on the
catwalk. Of course, it wasn’t Frank’s first time
strutting his stuff. Special thanks to Rainbow
Room and Frasers for supporting the fashion
show.
Margaret Solis made a very touching speech
on her experience of living with Huntington’s
disease. A very brave lady for getting up to
tell her story.
Clanadonia hit us with their tribal rhythms,
and got everyone moving to the beat.
To finish off the evening, everyone took to
the floor with DJ Tatyana with her great
sounds.
A great evening had by all!
Jackie McNamara
and some of the
beautiful models
Gina McKie
pictured with
John Eden
Here’s Allan Russell
and Kevin Twaddle
taking to the catwalk
Our fabulous volunteers
on the night, from left
to right, Kate, Jane,
Isobel, Janet, Myra,
Ellen, Wilma, Jane,
June, Alison and Lou
Fundraising
Clanadonia in action
Craig Dargo surrounded by gorgeous girls
Gordon Smith, Chief Executive of SFA,
Frank McAvennie, Jackie McNamara and
Allan Russell
Margaret Solis
giving a short
speech on her
experience
living with HD
10 11

Fundraising
Mo Fraser from Edinburgh spent his 65th
birthday giving presents instead of receiving
them.! Mo organised a golf
tournament at Silverknowes on
18 April this year, then a charity
sports auction at the Masonic
Club in Portobello. Including
donations from family and kind
hearted friends, Mo managed to
raise £860 for the SHA.
Thanks again Mo, and we hope
you enjoy your retirement.
Golf day at the Old Course Musselburgh
Our young and very keen fundraiser Shorti McKinnon
organised another fantastic fundraising event this year, a
golf day at the Old Course Musselburgh. Fans were
queuing up to play with their football heroes. Jackie
McNamara and Jackie McNamara Senior came along to
play, along with Craig Cargo, Kevin Twaddle, Darren
Jackson, Ralph Callaghan, John Clark, Kevin Smith,
Gordon Smith Gordon Smith Senior and Councillor
Kenny McLeod.
Shorti was helped out by his mum and dad
Jan McKinnon and Craig Gilfillan.
£1,500 was raised for the charity. It was such
a success and an enjoyable day that the
team are running the same event next year.
Thanks again Shorti!
Shorti has also been nominated for several awards for his fundraising efforts.
Well deserved.
One of our clients , Wendy Knight,
has come up with a lovely fundraising
idea - to make an HD quilt. It would
be a concerted effort in that others
might like to donate a piece to the
quilt for a small fee.
As people travel to see quilts and
textiles, perhaps the finished product
could then be displayed in a museum
or a large house e.g. Falkland
Palace.
If anyone is interested in making a
contribution, please contact Jean at
our Fife service on 01592 647 993.
THE MAD HATTERS ARE BACK!
Yes, they’re supporting
us again this year!
Our mad hatters, who
wish to remain
anonymous, cycled
140 miles, from Leslie
to Oban, on 12 July
2009. They managed
to raise £591!
Thanks to all of you.
Many of you will know Anita Manning
from Flog It and Bargain Hunt or from
Great Western Auctions in
Glasgow.We were delighted to have
Anita record a short piece on behalf of
Scottish Huntington’s Association to
raise awareness of the charity and
ask for support. The 40 second slot
was played 5 times per day every day
for a week and we were also featured
on the Real Radio website.
Here is Anita pictured in full flow
recording at the Real Radio studio in
Glasgow.
Research
ScienceDaily (June 15, 2009) - Researchers at the connections, requiring a robust transport system.
University of Illinois at Chicago College of Medicine
have discovered how the mutated huntingtin gene acts
on the nervous system to create the devastation of
Huntington's disease. The report of their findings is
available in Nature Neuroscience online.
"Inhibition of neuronal transport is enough to explain
what is happening in Huntington's," said Brady. Loss of
delivery of materials to the terminals results in loss of
transmission of signals from the neuron. Loss of signal
transmission causes the neurons to begin to die back,
The researchers were able to show that the mutated leading to reduced transmissions, more dying back and
huntingtin gene activates a particular enzyme, called eventual neuronal cell death.
JNK3, which is expressed only in neurons and, further,
to show what effect activation of that enzyme has on
neuron function.
This mechanism also explains the late onset of the
disease, Brady said.
Activation of JNK3 reduces transport but does not
Huntington's disease is an adult onset
eliminate it. Young neurons have a robust transport
neurodegenerative disease marked by progressive system, but transport gradually declines with age.
mental and physical deterioration. It has been known for
more than a decade that everyone who develops the
disease has mutations in a particular gene, called
huntingtin, according to Scott Brady, professor and head
of anatomy and cell biology at the UIC College of
Medicine.
"If you take a hit when you're very young, you still are
making more and transporting more proteins in each
neuron than you need," Brady said. "But as you get
older and older, the neuron produces and transports
less. Each hit diminishes the system further. Eventually,
the neuron falls below the threshold needed to maintain
"There are several puzzling aspects of this disease," cell health."
said Brady, who is co-principal investigator on the study.
"First, the mutation is there from day one. How is it that
people are born with a perfectly functioning nervous
system, despite the mutation, but as they grow up into
their 30s and 40s they start to develop these debilitating
symptoms? We need to understand why the protein is
bad at 40 but it wasn't bad at 4."
Brady's group has also linked this pattern of progressive
neurodegeneration -- marked by a loss of signaling
between neurons, a slow dying back of neurons, and
eventual neuron death -- to damage to the transport
system in several other hereditary adult-onset
neurodegenerative diseases and to Alzheimer's disease.
The second problem, according to Brady, is that the
gene is expressed not just in the nervous system but in
other parts of the body. However, the only part of the
body that is affected is the nervous system. Why are
neurons being affected?
Brady, Gerardo Morfini, assistant professor of anatomy
and cell biology at UIC and co-principal investigator of
the study, and their colleagues began looking for a
mechanism that could explain all the pieces of the
puzzle.
They found that at extremely low concentrations,
huntingtin was a potent inhibitor of axonal transport, the
system within the neuron that shuttles proteins from the
cell body where they are synthesized to the synaptic
terminals where they are needed.
A neuron's critical role in making connections may
require it to make the cellular trunk, called an axon,
between the cell body and the synaptic terminal to be
very long. Some cells have axons that reach half the
body's length -- for a tall person, a meter or more. But
even in the brain, axonal projections are very long
compared to other cells. In addition to the challenge of
distance, neurons are very complex cells with many
specialized areas necessary to carry out synaptic
"There is a common theme and a common Achilles heel
of the neuron that underlies all these diseases," Brady
said. "We've invented a word, dysferopathy, (from the
Greek 'fero', to carry or transport) for these adult-onset
neurodegenerative diseases. All have disruption of the
axonal transport system in common."
The study was supported by grants from the
Huntington's Disease Society of America, the National
Institutes of Health, the Muscular Dystrophy Association,
the ALS Association and a Marine Biological Laboratory
Summer Fellowship.
Other authors on the study are Yi-Mei You, Sarah
Pollema, Agnieszka Kaminska, and Gustavo Pigino of
UIC; Katherine Liu of the Marine Biological Laboratory
at Woods Hole, Mass.; Katsuji Yoshioka of Kanazawa
University, Japan; Benny Björkblom and Eleanor T.
Coffey of the ?bo Akademi and Turku University in
Finland; Carolina Bagnato and David Han of the
University of Connecticut Health Center; and Chun-
Fang Huang and Gary Banker of the Oregon Health &
Science University.
Adapted from materials provided by University of Illinois
at Chicago, via EurekAlert!, a service of AAAS.
12 13

Linlathan Neurodisability Centre
Caring for people suffering from Huntinton’s
Disease:
A Centre’s perspective a year on from opening
to make use of the local facilities and public
services available where possible.
We utilise a person centred approach and place a
I joined Linlathen Neurodisability Centre in strong emphasise on individual choice, where
Dundee, part of The Huntercombe Group, in possible involving the clients and families in the
autumn 2008 as the Clinical Team Leader. The care planning process. We work within a
Huntercombe Group is one of the leading multidisciplinary team and have built a good
specialist providers in the independent sector with working relationship with various agencies in
many established units providing a range of order to ensure our clients access relevant
services, almost exclusively to the NHS and Local services within their treatment plan. These
Authorities. services include a local General Practitioner,
Dentist, Opticians, Chiropodist, Community
Within Linlathen Neurodisability Centre, we have Speech and Language Therapist, Community
a purpose-built specialist care unit called Dietician, Physiotherapist, Community Mental
Bridgeview, which was opened in summer 2008, Health Team and Huntington’s Advisory
providing individual care packages for Nurse/Scottish Huntington’s Association.
Huntington’s Disease clients who require respite
or longer term care. Within Bridgeview we have To ensure best practice we operate a continuous
12 beds offering a spacious and therapeutic in house training programme alongside Paul
environment designed to meet the needs of adults Johnston, a behavioural therapist working within
with Huntington’s Disease. The layout of the unit The Huntercombe Group. We have also
is conductive to maintaining the safety of our developed a good working relationship with Paula
clients. All rooms are single with en-suite McFadden and her colleague Allison Tonner from
facilities. We have a therapy room, an assisted The Huntington’s Association, who regularly visit
bathroom, a quiet lounge and a large day room Bridgeview to provide ongoing support, advice
with panoramic views across the countryside. and training.
As a team we recognise that living with a I recently took part in The Scottish Huntington’s
neurodisability can result in low self-esteem, low Association annual conference, which took place
mood and a feeling of vulnerability. Our aim is to in Dundee. One of the main themes of the
create an environment that is welcoming, conference was:comfortable
and safe, facilitating a positive
attitude towards independence. Our staff team is “Huntington’s does not affect people, it affects
committed to providing high standards of nursing families” This could be said for a variety of
care, treating each client as an individual and neurological disabilities but, as we all know,
reflecting their wishes and rights to privacy, particularly for Huntington’s Disease. It is
dignity and respect. We also aim to help our therefore vital that the care and support we
clients regain their self confidence and realise provide extends to families and carers of each
their own potential by providing physical and individual. We have an open door policy, staff are
emotional support. Our structured programmes of very approachable and we actively encourage
recreational activities facilitated by our therapists people to come and discuss any thoughts, ideas
are tailored to meet the requirements of or concerns at any time. Following some research
individuals’ needs and choices. These are with care managers, families and clients, there
planned to enable each client to achieve their full appears to be limited support groups available
potential. Clients are encouraged and supported with a specific focus on Huntington’s Disease.
Cont.....
One of our aims is to build up a support group of means it very quickly becomes a home from
this nature within Bridgeview. The aim of the home for the sufferer and their family. The staff in
group is to provide support, advice and a friendly the unit are not only very well trained but
face, giving clients, families and carers a chance dedicated to their task and each one is willing to
to discuss with professionals and each other any give that little bit extra. Each resident is treated
issues they may have. The group will also as an individual and the staff quickly become
provide an opportunity for relatives to become sensitive to their needs which are met with
more involved with the care of their family professionalism and respect. I feel as much part
members, to increase communication and to have of the Linlathen family as my husband and I am
their views heard. We feel communication is the given tremendous support at all times. H.D.
vital component in any care package. We see our presents many challenges but everyone at
client’s views, wishes and needs to be paramount Linlathen remains relaxed, happy and full of fun.
in the care we provide. If you or a loved one suffer from H.D. then
Linlathen is certainly a place you should visit!” If
A year on from opening, the unit is busy and firmly you would like to speak to us or request a
progressing to reaching the objectives that we set brochure, please contact either myself or James
out to achieve. As Margaret McPherson Barnett, Centre Manager, on 01382 480707.
comments, “Linlathen is most definitely the centre
for anyone suffering from Huntington’s Disease. By Paul McMurray, Deputy Manager/Clinical Lead
The welcoming, caring atmosphere in the unit Linlathen Neurodisability Centre, Dundee.
14 15