Great grandma has a head for heights - Blood test breakthrough - Huntington's Disease Association
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Get involved
in research
63 marathons
in 63 days
10 top tips for
Winter 2017
carers
Great grandma
has a head for
heights
Blood test
breakthrough
Black days to
black belts
TV, tattoos and
making every
day matter
Elysium Neurological provides specialist
care and rehabilitation for people with
Welcome
neurological conditions, acquired brain
In this edition
injuries and spinal cord injuries. 6 Research news
10 TV, tattoos and making every
moment matter
16 Inherent: A Huntington’s disease
story
From Andrew Bickerdike,
18 Black days to black belts: how
Chair of Trustees and
kickboxing helps Matt with
Cath Stanley, Chief Executive
Huntington’s
20 Inspirational fundraising volunteers It’s hard to believe that winter is upon us and
honoured with awards another year has flown by. We’ve continued our
focus on supporting people living with Huntington’s
22 63 marathons in 63 days and their families, through visiting people in their
homes, providing information, and sharing advice
25 Upcoming events online and over the phone. With an increasing
28 Spotlight on…Newcastle branch emphasis on the digital world we’re looking at
how we can develop that side of our support. We
30 Top 10 tips for carers launched our new website in October, which we
hope will provide useful support and information.
We’ll be updating the site over the coming months
and plan to add new resources and functionality.
Contact us
From our four specialist centres Elysium Neurological We’ve made progress on a new scheme of
provides the specialised care and expert therapeutic 0151 331 5444 accreditation for nursing homes – thank you to
interventions required for people affected by the www.hda.org.uk everyone who has participated in the consultation
majority of known neurological conditions including info@hda.org.uk process. Read about the scheme on page 13.
Huntington’s Disease. @HDA_tweeting
New data protection laws come into effect in May
Located in Bosbury near Hereford, Stanley House @hdauk 2018. This may change the way we keep in touch
is dedicated to providing a home from home for all with you. You’ll be hearing more from us in the next
Suite 24 Liverpool Science Park IC1
its residents. Badby Park located in Daventry near few months about how you can keep up to date
131 Mount Pleasant, Liverpool L3 5TF
Northampton is set within rolling parkland and like with news from the Huntington’s community when
Registered charity no. 296453
it’s sister service in Stoke on Trent, Adderley Green; these changes happen.
offers a full inter disciplinary team to support and Our services provide long term complex care and respite For advice or support from one of our
enable residents to undergo reviews of their specific for those adults who require specialist care to meet their Specialist HD Advisers visit: We’ve packed this edition with updates on research
and/or changing needs. The Bridge in Middlesbrough complex physical and psychological impairments. www.hda.org.uk/supportnearyou into Huntington’s, including how you can get
will open in late autumn 2017.
involved. You can also read inspirational stories
You’ll notice we look a bit different to our previous about people living well with Huntington’s, raising
publications. We’ve started work to develop and awareness on TV and in the community, insights
modernise the look and feel of the Huntington’s for carers and successes from some of our fantastic
Disease Association. By doing this we’re aiming to fundraisers.
connect better with the people we support and to
For more information about any of the services or care reach new audiences. Keep a look out for more to We’re incredibly privileged to have so many
pathways Elysium Neurological can provide please contact: come! volunteers who tirelessly raise funds and awareness,
run branches and support groups and offer a
Rachael Chamberlain on 07387 108625 The views expressed in this publication do not
necessarily reflect those of the Huntington’s Disease
listening ear to others. Your help is invaluable –
or rachael.chamberlain@elysiumhealthcare.co.uk thank you for all you do.
Association (HDA). The advertisement of third party
Confidential information should be emailed to:
rachael.chamberlain@nhs.net
products or services does not imply endorsement from
the HDA. Thank you
RESEARCH ARTICLE HEAD
Blood test can predict
onset and track progression
of Huntington’s disease
The first blood test that samples from the TRACK-HD onset, progression and the rate of
can predict the onset and study, an international project brain shrinkage as measured by
progression of Huntington’s that followed 366 volunteers for MRI scans.
disease has been identified in three years.
a study led by researchers at Currently, the best biomarkers
University College London. They found that levels of the available are measured with
brain protein were increased neuroimaging or cerebrospinal
The researchers say their findings throughout the course of HD fluid, which are more difficult and
should help test new treatments – even in carriers of the HD expensive than a blood test. The
for the genetic brain disorder. gene who were many years researchers say that predicting
Dr Edward Wild
from showing symptoms of progression in people with the
“This is the first time a potential the disease. People with the Huntington’s gene who do not
blood biomarker has been HD gene had neurofilament yet show symptoms has been could help us figure out whether
identified to track Huntington’s
disease so strongly”, said senior
concentrations that were 2.6
times more than the participants
particularly challenging. those brakes are working.”
“We have been trying to
researcher Dr Edward Wild. who didn’t have the gene, and
the level rose throughout the
“We have been trying to identify
blood biomarkers to help track
However, the researchers caution
that the test is not expected identify blood biomarkers
The test measures the
neurofilament light chain
course of the disease. the progression of HD for well
over a decade, and this is the best
to be immediately helpful for
individual patients. “This is the to help track the
progression of HD for well
(neurofilament), a protein In the group who had no candidate that we have seen so first time neurofilament has
released from damaged brain symptoms at the start of the far,” said Dr Wild. been measured in blood, so
cells, which has been linked to study, the level of neurofilament much more work is needed to
other neurodegenerative diseases
but hasn’t been studied in the
predicted the onset of the
disease, as those with high
“Neurofilament has the potential
to serve as a speedometer in
understand the potential and
limitations of this test,” said
over a decade, and this is
blood of Huntington’s disease
patients before.
neurofilament levels in the blood
at the start were more likely
Huntington’s disease, since a
single blood test reflects how
Lauren Byrne, the study’s first
author. “In the future, if drugs
the best candidate that we
The team, led by scientists at UCL
to develop symptoms in the
following three years. After taking
quickly the brain is changing.
That could be very helpful right
to slow HD become available,
it may well be used to guide have seen so far.”
Huntington’s Disease Centre, into account factors already now as we are testing a new treatment decisions. For now, this
working with colleagues in known to predict progression – generation of so-called ‘gene test is most promising as a much
Sweden, the USA, Canada, France age and a genetic marker – the silencing’ drugs that we hope will needed tool to help us design
and the Netherlands, measured blood level of neurofilament was put the brakes on the condition. and run clinical trials of new
neurofilament levels in blood still able to independently predict Measuring neurofilament levels drugs.”
4 5
RESEARCH RESEARCH
Get involved with
Huntington’s
research Enroll-HD is a clinical research platform that includes a
worldwide observational study for Huntington’s disease families.
The study is a global project to develop new drugs, better
designed to improve ways to test whether the drugs
understanding of Huntington’s will be effective, and helps drug
and to enable faster, smarter companies set up trials more
and better clinical trials. Since quickly.
the study started in 2012, over
Scientists around the world 15,000 people in 15 countries In the UK, there are 28 study
are researching ways to slow have signed up and the study centres across England, Wales
down or prevent Huntington’s continues to grow. and Scotland actively recruiting
disease. There are also teams new participants. Taking part in
investigating new treatments Enroll-HD has generated the the study means visiting one of
to help with the symptoms. world’s largest database for these centres once a year. The
Getting involved in research Huntington’s clinical research Huntington’s disease specialist
is a great way to help people – a hugely important resource team at the centre will do some
with Huntington’s disease for researchers to learn more tests of movement, thinking and
now and in the future – and Research participant Nick having an about the disease. The database mood, and will ask for a small
you don’t always need to have MRI scan. An MRI scanner contains a includes information from a blood sample.
large magnet and can show detailed
the Huntington’s gene to pictures of the brain. The researcher, wide range of participants from
contribute. Eli, explains the scan to Nick before he around the world who are at If you’d like to take part, you
lies down flat on the bed and his head different stages of the disease. can find your nearest Enroll-
is placed inside the magnetic ring.
Here you can find out This allows researchers to gain HD study centre and more
more about two important a better understanding of why information about the study,
studies that are looking for and when certain signs and at www.enroll-hd.org
participants right now. symptoms appear.
5
While Enroll-HD doesn’t involve
testing any potential drugs or
time when future therapeutic complete, the researchers will other therapies directly, it aims
treatments can be given
to prevent it. The study will
analyse the data and aim to
publish the results of the study
to speed up research into new
effective treatments. It helps
years
15
include 120 young adults in spring 2020. researchers identify new ideas
between the ages of 18-40.
Half of this group will be The researchers are still looking
people who carry the gene for people to take part until
and the other half will be December 2018. The team
A research team at University
College London, led by
people who don’t carry the
gene.
arrange the visit to London
and provide a hotel, travel
countries
15,000+
The research team at University
Professor Sarah Tabrizi, have College London and expenses. Participants
begun a new research project The study opened in August are welcome to bring a friend,
called the Huntington’s 2017 and so far 22 young people partner or family member for
Disease Young Adult Study
(HD-YAS).
from around the country have
travelled to London to take part.
people remember and process
information, having blood taken
company. participants
The visit lasts up to a day and a and answering questionnaires If you’re aged 18-40 and
The study aims to identify the half and involves having an MRI about symptoms such as anxiety would like to know more about
earliest point at which changes brain scan, playing computer and depression. There’s also an how you can take part, please
related to Huntington’s can be based tasks and games to option to donate cerebrospinal email jessica.lowe@ucl.ac.uk
found, and therefore the earliest help understand the way fluid (CSF). When the study is or call 0203 108 7539.
6 7
RESEARCH RESEARCH
“We are very
excited about
working more
closely with
the Huntington’s
Disease Association on
Investing in
a project we feel very
passionately about. The grant
Huntington’s
will allow us to look in great
detail at the factors related to
changes in financial decision
research making in Huntington’s
and also at how many
Research into Huntington’s Huntington’s patients and Encouraging people to get active through
is happening across the families have been affected
by financial abuse in the UK.
specialist Huntington’s disease clinics
world, with scientists
This grant will allow us to do Cardiff University
exploring all aspects
what motivates us the most –
of the disease to find research aimed at improving Over the last ten years, more and more research studies have
effective treatments and the everyday lives of our shown that exercise is safe and beneficial for people with
the ultimate aim of a cure. patients.” Huntington’s disease. But research also shows that physical activity
While their inspiring effort Professor Roger Barker, levels of people with Huntington’s remain low. So it would appear
continues to give hope University of Cambridge that there are challenges to this research being used within clinical
for people in the future, practice. There’s also evidence that healthcare professionals such
it’s important to consider as doctors and physiotherapists don’t encourage people to get
ways to improve life for Understanding people with Huntington’s acting
impulsively and making quick,
get an accurate understanding of
how people manage their money,
more active.
people with Huntington’s financial decision ill informed decisions. It can also their perception of financial This research project, led by Dr Una Jones, aims to explore the
in the here and now.
making in mean they have difficulty working
out the risks in situations and
abuse and their experience of
financial mismanagement.
challenges of applying the recommendations from the previous
research in the clinics, and to help clinic staff to develop plans to
We’re supporting projects
that can help make a Huntington’s can struggle to handle multiple promote physical activity with their Huntington’s patients.
difference for people disease pieces of information, making it
hard to solve complex problems.
By working with participants at
different stages of the disease An important part of the project is to get the perspectives of
living with Huntington’s. the team will identify the things healthcare staff, and importantly to hear from people with
University of Cambridge
The projects have been Research has shown that that influence how people with Huntington’s and their carers. The researchers will bring both
reviewed by the HDA’s problems at work are one of Huntington’s make decisions groups together, giving them the opportunity to discuss how
medical advisory panel, The way we deal with money has the first noticeable difficulties about their money. This will give physical activity could be promoted within specialist Huntington’s
a group of Huntington’s changed in recent years, with in Huntington’s disease, closely the team an insight into the areas clinics. The discussions will be summarised and sent to everyone
disease scientific experts, internet banking, phone sales followed by problems with making Huntington’s patients who takes part, giving clinic staff the information they need
and our HD Voice research and pin numbers becoming the managing their finances without particularly vulnerable to financial to adapt their practice to promote physical activity with their
norm. This has left many people support. abuse. patients.
panel, a group of people
at risk of financial abuse, such
from our community who as theft, fraud and exploitation. Professor Roger Barker and his The team will also test a group The researchers will follow up with the clinics six and 12 months
have direct experience of People with Huntington’s disease research team at the University of people with the Huntington’s afterwards to find out what changes have taken place and any
Huntington’s disease. are particularly vulnerable. of Cambridge will investigate gene who are on the cusp of benefits there have been for their patients. The results will be
financial abuse by looking at being diagnosed, and repeat shared with the Huntington’s community so that as many
Huntington’s is associated with the experiences of people with it two years later. This may people as possible can learn from their findings.
a loss of connections in the Huntington’s disease, their help to identify changes
brain that link critical areas families, carers and support that could predict future “The funding from the HDA means that we can work
deep within it to the thinking workers, to see how much of a financial vulnerability. towards implementing the findings from large research
parts at the front. When these problem financial abuse is in studies in the real lives of people with Huntington’s
circuits breakdown it can lead Huntington’s disease. disease. We know that exercise is safe and beneficial –
to problems with thinking and we now need to work out how people with Huntington’s
changes in behaviours. These Through interviews and cognitive disease can integrate physical activity into their daily lives.”
changes can often lead to assessments, the scientists aim to Dr Una Jones, Cardiff University
8 9
FEATURE ARTICLE HEAD
TV, tattoos and
making every “The Huntington’s
moment matter: Disease Association
has not seen the last
how Huntington’s
of me – there’s so
much more I want
to do.”
has changed me
Harry-Jon’s tribute tattoo was inked by
celebrity tattoo artist Jay Hutton (top),
Harry-Jon’s family knew nothing Ellie-Mae passed away later in he explains, “a tattoo of a photo based on his favourite photo with his
of Huntington’s when his younger 2014 aged just 16. “My biggest of the two of us as toddlers on sister (left)
sister Ellie-Mae developed regret,” says Harry-Jon, “is that swings, me looking down on
symptoms in 2011. She had I wasn’t able to spend more her. It said so much about our
always had difficulties and was time with her. It’s hard for young relationship.” The programme for the crew, who he says were Huntington’s, to a new, younger
thought to be on the ADHD and people these days – you have makers agreed and soon he was very moved by what they heard, audience.
autistic spectrums, but then her academic pressures, decisions travelling to London to record the particularly the genetic nature
mobility became affected. She to make. But when something programme. of Huntington’s and how it “I love my tattoo but most of all
Twenty-two-year-old Harry-Jon was diagnosed with Juvenile like this comes into your life, you affects generations of families. I’m proud of the awareness I have
Morgan is fit, healthy, self- Huntington’s disease in 2012. “It change. There’s a sort of collateral The incredible life-like image was Harry-Jon’s grandad died from been able to raise,” says Harry-
assured and full of life, but he took a long time to get to grips beauty that comes out of it – from tattooed on his arm and Harry- the disease eight months after Jon. “I’m so happy I did it. I would
admits there have been ‘dark, with what it was,” says Harry-Jon. something so terrible, you get Jon has nothing but admiration Ellie-Mae, and his father has since say to anyone who is considering
dark days’. Currently a student “Eventually we realised it was in something good. I had started been diagnosed with it. whether to go for something, just
in sports coaching at Leeds our family and that our grandad letting myself go but I changed do it. Ellie-Mae is the reason and
Beckett University, Harry-Jon had it.” my lifestyle. I started playing The public reaction to the she keeps me going, even now.
has a take on life that’s mature rugby regularly again, I started broadcast was huge. A segment She fought with such dignity and
beyond his years. As well as Harry-Jon and Ellie-Mae were smiling at people and I didn’t from the episode featuring grace and she inspired us all.”
studying, he plays rugby at a extremely close, part of a large even realise I was doing it. I knew Harry-Jon shared on Facebook
highly-competitive level, has a family of six siblings with mum my sister would want me to live has attracted 7.6 million views to
part-time job helping children Samantha and stepdad Richard. every day, not to waste it.” date, with over 90,000 likes and
with disabilities and talks about Seeing his sister go through the almost 30,000 shares. Harry-Jon’s
the need to make every day disease was, at times, unbearable. Sometime later, he hit on an local paper covered the story and
count. This year he achieved his “She really was amazing, though,” idea. Having seen an episode he was inundated with messages,
ambition to appear on national he says, “She coped with so of the popular TV show Tattoo not just from friends but from
To watch the
television. Much, if not all of this, much. But my mum was the real Fixers (where people get tattoos well-wishers, as well as others Tattoo Fixers
he puts down to Huntington’s hero in all this, because she was transformed or created), he got whose families were affected episode featuring
disease - in particular, Juvenile her full-time carer.” in touch and told them his story. by Huntington’s. The show was Harry-Jon, go to:
Above: Harry-Jon and Ellie-Mae were
Huntington’s disease. “I knew exactly what I wanted,” getting the message out about
very close
bit.ly/2AQuyMg
10 11
NEWS
Remember
someone
special this
Christmas
Take a look
at our new
website at
www.hda.org.uk
Dedicate a festive light on our online Christmas
tree in memory of someone dear.
You can honour their life while helping others
at the same time.
To dedicate a light to a loved one and leave a
special message of remembrance visit:
www.hda.org.uk/remembersomeonespecial
Momentum building for new care home accreditation scheme
Have you seen our We understand that moving
to residential care is one of
Over the past few months, we’ve
met people up and down the
providers to participate. In
October we hosted a workshop
new website?
the most difficult decisions country who’ve shared their for providers to learn more
a person with Huntington’s experiences to help develop about the accreditation scheme
and their family may make. the scheme, while others have and how it could benefit
We’ve heard from many shared their views in an online them to take part. Over 40
people who have been questionnaire and over the delegates from more than 20
We’ve added lots of useful
information to help
HD Voice Reader Panel through this, who would
have found it helpful to know
phone. Their feedback has given
us unique insights into what is
care homes attended, and it
was clear that they would like
improve understanding of A group of volunteers with lived experience of beforehand whether a care important to families, and will to seek formal recognition
Huntington’s disease and Huntington’s disease reviewed the information home can cater for their help form the care standards for providing specialist care.
help you get better care. throughout our new website, bringing their unique loved one’s specific needs. care homes will need to meet. They also thought they would
perspectives and offering useful suggestions.
We’ve given it a fresh new These standards will be assessed benefit from the chance
look and made it easier to Do you have experience of Huntington’s disease? You We’ve begun a project to improve through the scheme, and care to share good practice and
navigate. could join our volunteer Reader Panel to help us learn standards at care homes that homes will receive accreditation learning. Cath Stanley, Chief
more about the types of information that is useful for specialise in caring for residents when they achieve the necessary Executive, commented: “It was
We’ve got some exciting people living with Huntington’s and their families. with Huntington’s. We’re aiming criteria. encouraging to see so many
new features in the To find out how you can get involved please get in to build an accreditation scheme providers at the event. Their
pipeline so keep checking touch with Ruth Abuzaid by email: to give families confidence when Importantly, we’ve also enthusiasm for the project was
back to see what’s new! ruth.abuzaid@hda.org.uk or phone: 0208 446 9879 choosing a home. encouraged care home exciting to hear.”
12 13
NEWS
BBC Children in Need awards grant to
expand specialist youth service
A generous grant of £116,000 over three years
from BBC Children in Need will extend our
specialist youth service for children and young
people growing up in families affected by
Huntington’s disease.
The grant will help fund a new Specialist together will give more children and
Youth Worker, alongside new activities young people the opportunity to speak
to bring children and young people to someone who understands the
affected by Huntington’s together to difficulties they may be facing.”
share their experiences and support
each other. Ruth Abuzaid, Deputy Head of
Advisory Service said: “We look forward
specialised neurological care We’re delighted that Neil Holman (top to analysing and expanding the youth
right) has joined us to develop the service service by looking at the information
in the south of England and South Wales, we provide for young people and the
made possible by the Children in Need opportunities we give them to get
grant. He is joined by new Specialist together, both virtually and physically.”
Youth Worker James O’Connor (bottom
right), who takes over from Adam Cho, James and Neil will continue to
who will work with children and young offer ongoing one-to-one support
people in the north of England and and will start working with children
North Wales. and families in January 2018. In the
meantime, if you or a young person you
Kate Davis, Head of Fundraising, said: know have any queries, or need help or
PJ Care is a leading provider of specialist Our residents’ care is at the heart of “We’re incredibly grateful to Children in Need. advice, please call 0151 331 5444 or email info@
neurological care and neuro rehabilitaion everything we do. We strive to nurture Their mission of improving the lives of children hda.org.uk to be put in touch with your local
for people with progressive or acquired dignity, independence and privacy through across the UK fits well with our plans to extend Specialist Huntington’s Disease Adviser.
our youth services. Having Neil and James working
neurological conditions. our purpose-built facilities, our highly
trained multi-disciplinary teams, the care
models we offer and the therapies and
You could
activities we provide.
Grand Prize Draw
We have three specialist neurological care Friday 2 February 2018
win £1000!
centres in Milton Keynes and Peterborough. What a great way
Tickets cost just £1 each and every ticket you buy will help
To find out more, please call us on:
us to support families affected by Huntington’s disease.
to start 2018
To enter the draw, return your tickets to Head Office by 26 January 2018
All winners will be notified in writing. A full list of winners
will be available on our website from Monday 5 February 2018.
For more information or to request more tickets please email
info@hda.org.uk or call 0151 331 5444.
1st prize 2nd prize 3rd prize
£1000 £500 £250
cash cash cash
15
Let our family take care of yours.
AWARENESS FEATURE
Inherent:
We’ve teamed up with award winning social
documentary photographer Stephen King to create
an awareness exhibition, giving our contributors
a Huntington’s
the chance to tell their own story and curate their
own entry in the exhibition through words and
pictures.
disease story
Sponsored by
The
Lucking
family’s
story petrified of passing it on to the
kids, and that was my main
“You have a
concern with doing the test. I
found that really traumatic. I felt
moment in your
Shelagh: Our dad had
Huntington’s disease.
really guilty. That was my focus
for a long time before they went
life which could
He was one of 15. We
sort of knew something was in
and had their own tests.
last for 15
the family but we didn’t know
anything about it until our dad
Amy: It was about six years
between when I found out
minutes, but
was diagnosed in his sixties. I
looked into it a bit more because
about mum, and having my own
test. I didn’t see the purpose in
could change
I had three children, so I wanted
to have the tests pretty quickly.
going and finding out before
then. I’m not like mum, I don’t
everything.”
I’m a need-to-know person. see the point in dealing with
that amount of detail. It was
Helen: Once I’d decided to have only when I was 22 and in a
the blood test I just wanted to relationship and was going to be
find out. You have to go through thinking about having children
counselling. They have to do that that it came into my life.
and it’s a benefit to some, to happy for you.” It’s hard to know
them as well, to find out whether Ruth: When I had my test I was what to feel in that situation.
you can cope with it. But at the in shock. I had the test, and then
time you just want to know. I they lost the results and I had to Amy: As you walk in to get the
wanted to set my life out and do have it redone. The nurse didn’t results, you have a moment in
different things if I was [gene] even wait for me to get in the your life which could last for
positive – which I was and I have. room. She saw me pull my car 15 minutes, but could entirely
up and she came running out. “I change everything. And that’s
Shelagh: I was [gene] positive couldn’t wait, I couldn’t wait, I’ve when it hits – when you walk
Left to right: Shelagh Lucking,
too. I was really scared for the been waiting for you to get here through the door to get the
Helen McDermott, Amy
Whittle and Ruth Lucking kids. Not really so for me. I was all morning. You’re clear, I’m so results.
16 17
LIVING WITH ARTICLE HEAD
HUNTINGTON’S
“My kickboxing club
fun to do as a family. Then, Despite doing all they can to were amazing. They
having progressed well, Marie
sustained a bad injury and Matt’s
stay well, “Life is hard,” admits
Matt. “Getting out of bed each
really got how this
Huntington’s symptoms started morning is a battle that needs to could help me and
to develop. They took a break be won every day. But Marie tells
of around two to three years, me I’m the bravest, strongest what I needed to make
during which Matt admits, “I’d
become very unsure of myself.
man she knows, because I’m
constantly fighting so many
it happen. They were
I was worried about falling over
and suffering with insomnia. But I
internal battles which HD throws
at me.” He explains that for
supportive from the
saw a sleep consultant, had some him, it’s all about trying to value very beginning.”
cognitive behaviour therapy and himself, about reclaiming what
eventually realised that getting Huntington’s takes away. “I’m
back into kickboxing could really doing this as Matt Ward. Not HD
help me.” Matt,” he says.
Matt had read about clinical
studies that suggested people
Black days to black belts: with Huntington’s, Parkinson’s,
brain injuries and other
neurological problems may
How kickboxing helps benefit from martial arts; that
a mix of balance, strength,
Matt with Huntington’s
focus and co-ordinated moves
can improve symptoms across
mind and body. His kickboxing
instructors noticed that while he
entered the class using a walking
stick, he was often able to leave
without using it. “They also Matt’s top 5
appreciated I needed to make tips for
progress, to get through the living well
belts.” says Matt. “So, they slowed Depression is very
Forty-three-year-old Matt Ward in his family and was hoping everything he could about things down for me and adapted
4 common – we all go
has a black belt in kickboxing. for a child of his own, when his Huntington’s, and he had a head the grading process. For example, through peaks and troughs.
He also has Huntington’s father dropped the bombshell start. He explains, “Coincidently I have problems with memory I try to do things that will
disease. Achieving this level in that his grandfather had died of I’d studied HD whilst completing and getting fatigued, so they Every day I try to do some help give me a more positive
a martial art while battling the the disease and they suspected a molecular genetics degree. divided what should have been
1 physical activity such as outlook.
effects of the illness has not his mum had inherited it. Any My first job after graduating was a whole day of testing into three the gym or kickboxing as it has
been easy, but Matt’s pretty child, would be at risk. It was a in a medical school lab, but I’d chunks.” such positive effects on my Research has had a very
convinced he would not be as devastating shock. By the time changed direction and got into mood and lifts my cognitive
5 meaningful impact on
well as he has been, without Matt met his second wife Marie, IT.” This knowledge, he explains, Last year, Matt won his club’s fog. I try to stay fit, physically, my life. By contributing and
it. “Huntington’s takes so who had two children, he had helped him to understand not ‘most inspirational student’ mentally, emotionally. helping to find a cure – for me,
much away from you,” he says, taken the test and knew he had just the mechanics of why he was trophy and in March of this year, that’s fighting against it. I’ve felt
“and this not only has real the Huntington’s gene. getting ill, but also the emerging Matt and Marie both achieved I prioritise my life in touch with the leading edge
neurological benefits, it’s a research. As a result, participating their goal of attaining black belts.
2 differently, and spend of the science. Huntington’s is
way of me fighting back. Of me “I think because things were less in clinical trials has always been more time with my family. rare but the technologies being
being me.” hopeful when I was a child, and important to Matt and Marie, Matt is now, health permitting, developed will help not just
so much less was understood, and they began getting involved working towards his second I try not to put things off. HD patients but people with
In 2002, Matt was married and my parents put their heads straight away. Dan (the next grade above
3 If you know you might not many other neuro-degenerative
living in London with a successful in the sand. It was sort of out the first blackbelt) and he and make retirement age, it makes conditions. Terrible as the
career in IT when his life changed of sight, out of mind,” he says. Keen on all kinds of sports, Marie teach ‘Little Dragons’, a sense to do things sooner rather disease is, it’s uplifting to be a
forever. He didn’t know the Matt, however, took a different in 2009 the couple took up kickboxing class for children than later. part of this.
faulty Huntington’s gene was approach. He wanted to learn kickboxing as something aged four to eight years.
18 19FUNDRAISING ARTICLE
FUNDRAISING
HEAD
Inspirational fundraising
volunteers honoured
with awards
Great grandma’s
Young Volunteer of the
Year Henry Vervoorts
Most Inspiring Volunteers Margaret Cairney (above) and Mary
Wormleighton (above right) with Cath Stanley, Chief Executive
Friend of the HDA Les
Shan with Cath Stanley,
head for heights
with Cath Stanley,
Chief Executive, and
Charles Sabine
Chief Executive
helps the HDA
We were delighted to celebrate Nottingham. While Margaret Huge thanks to all the winners, Daredevil Shirley McConnell
the fantastic achievements Cairney from Nottingham nominees and each and every showed you’re never too old for
of our dedicated fundraising and Mary Wormleighton from person who raises funds and an adventure after taking on a
volunteers at our second Northamptonshire were awarded awareness of Huntington’s tandem skydive to raise funds for
Fundraising Volunteer Awards the Most Inspiring Volunteers. disease. We couldn’t do what we the HDA.
Ceremony. do without you.
Winner Mary Wormleighton The 82-year-old great grandma
Joining us at the Adelphi Hotel said: “I was thrilled to bits. There Thank you to headline sponsor from Stockport, Greater
in Liverpool, as compère for is no way I could have done Exemplar Healthcare, and award Manchester, jumped out of a
the evening, was Huntington’s it without the support of my sponsors Nutricia and Diligence plane at 11,000 feet with her
disease ambassador Charles friends and family. It was a really for making this event possible. grandson Alex McConnell and
Sabine, who congratulated each special night. The evening was a his fiancée Tara Goldsmith.
nominee for their wonderful humbling experience as everyone The trio chose to raise money
contribution to the HDA and in the room works so hard.” for the Huntington’s Disease
Shirley, Alex and Tara prepare
shared his own experiences of Association as Tara’s family is for their jump
raising awareness. Margaret Cairney said: “There are affected by Huntington’s.
such great volunteers out there, always wanted to have a go but
There were a staggering 17 I am just one of many. With or Alex said: “Tara’s father Roy not had the chance until now.
nominees for just two available without an award, I enjoy every sadly passed away as a result I’ve always liked flying and I Has Shirley inspired
awards in the Most Inspiring minute of raising awareness and of Huntington’s disease. Tara wanted to do it before I got too you to take on your
Volunteer category, and six fundraising.” decided to take the genetic test old. own challenge?
nominees in the new category of several years ago and learned
Find ideas, inspiration
Young Volunteer of the Year, with To complete the evening’s that she will also eventually “My friend did one and said it
and information for
the winners chosen by public honours, a special discretionary develop Huntington’s.” goes by so quickly you want to
fundraising at
vote. award, Friend of the HDA, was do it again, which sounded good.
www.hda.org.uk/
presented to volunteer Les Shan The thrill seeking trio took to The thought that a nice young
The Young Volunteer of the for helping the HDA with his the skies above Lancaster for man was safely holding me was fundraising
Year award was won by 14 professional IT experience for the parachute jump and raised reassuring too. You are never too
year old Henry Vervoorts from many years. nearly £2000. Shirley said: “I’d old.”
20 21FUNDRAISING FUNDRAISING
Little Print Shop of Horrors reopens for
Huntington’s disease awareness
A team of designers at
Manchester-based branding
agency Creative Spark have
flexed their artistic muscles to
raise funds for the Huntington’s
Writer uses Disease Association.
63 marathons literary talent Little Print Shop of Horrors is an
annual charity design challenge
in 63 days to raise funds where the team pick a ghoulish
theme and design unique posters
for inspirational
Author and poet Bruce Harris which are sold to raise funds
has published two books in aid for charity. This year’s theme is
of the Huntington’s Disease ‘Netflix and Kill’, with illustrators
fundraiser Nikki Love
Association, after his long term choosing an iconic TV series to
partner was diagnosed with reinvent with a creepy Halloween shows, including Stranger Things,
the illness in October 2016. twist. Peaky Blinders and Mad Men.
One poster, featuring Royle
An intrepid athlete from days. I told him if I ever did Odds Against, a book of 15 Each year the team donates Family star Ricky Tomlinson,
Photos courtesy of the Nottingham Post
Leicester has completed her anything crazy again it would award-winning short stories, all proceeds to a charity (pictured above) made a big
attempt to run 63 marathons in be for the Huntington’s Disease explores the theme of close to their hearts. Business impression on the actor, who
63 days in aid of the HDA – and Association, and I have kept my overcoming problems, with Development Director Claire signed one of the limited edition
hopes to have her achievement promise. the characters tackling various Critcher explains why they chose prints to be auctioned online.
recognised as a world record. problems in different ways. The the HDA: “20 years ago my wife,
“I can see the changes he’s going book is supported by a group Nicola, found out that her mum,
Nikki Love, a 50-year-old physical through. By supporting the HDA of writers including million- Lynne, had been diagnosed
trainer, started her challenge I’ve been able to raise awareness selling novelist Joanne Harris, with Huntington’s disease – a
at John O’ Groats on 27 August and funds for the charity, as I who began her career writing condition that had been part of
which took her across the UK, know they are there to help him short stories. their family for generations but
down to Land’s End, and back and his family.” had skipped four other siblings
up to finish in Leicestershire’s His second book, titled and found to have been inherited
Swithland Wood on 28 October. Rather than running in a straight Kaleidoscope, includes 50 only by Lynne. Because of this,
Over nine weeks, Nikki covered line from John O’ Groats to poems celebrating human Nicola faced the same decision
a staggering 1650 miles – the Land’s End, Nikki zig-zagged diversity in a variety of patterns as her mum all those years ago,
Nikki Love ran part of her challenge
equivalent of running the length with friend Dirk Vervoorts across the UK to visit all the and verse forms. and made the choice to take the
of Britain’s longest motorway, the places she wanted to see, predictive genetic test that has
M6, seven times! including Aviemore, St David’s, Bruce said: “As I no longer have been likened to the ‘flip of a coin’.
the Brecons, Brighton and the youth and fitness to go in
Nikki is hoping her achievement As well as attempting the world London. for marathons or swims, I have “We are now almost two years
will be recognised as a world record, Nikki used the challenge set out to contribute to the on from receiving the news that
record after having four tracking to raise funds for the HDA, Nikki received fantastic support work the HDA does in the best Nicola does not carry the faulty
devices strapped to her on aiming for a target of £6300. along the way, with friends way available to me, which is gene and we are more involved
every run to measure her time and well-wishers joining her at to dedicate to it the proceeds in supporting the HDA than ever.
and distance. She has sent the Nikki’s motivation to support the different places to run part of from my writing. The books It’s made us more determined The new prints are on sale now,
data to Guinness to be verified. HDA was close to home: “A good the route alongside her. “Dirk are aimed at making a direct to give time and energy back to alongside classic favourites
Nikki said: “The world record friend of mine, Dirk Vervoorts, joined me on the Nottingham contribution to supporting the those whose coin fell on the flip from previous years. You can
for consecutive marathons by was diagnosed with Huntington’s marathon and I expected him work of the HDA.” side.” browse and buy from the full
a woman is currently at 60, so I ten years ago. Around the to only do a small part, but he selection of artwork at
figured I’d simply round that up time Dirk was diagnosed, I stuck with it till the end. That was To find out how you can The exclusive series of 13 one-off www.littleprintshop
to nine weeks and go for 63.” ran seven marathons in seven inspiring.” order your copies of designs are based on popular ofhorrors.com
these special books visit
harriscentral.org
22 23ADVERTISING FEATURE EVENTS
SPECIALIST CARE SERVICES: Upcoming events
HUNTINGTON’S DISEASE Our events give people the chance to come together with
others facing similar experiences to learn and share. Find
With over 200 care homes and 7 hospitals, Barchester Healthcare is one of out about our upcoming events and how to book your
place at www.hda.org.uk/events or call 0151 331 5444.
the largest care providers in the UK and has over 20 years of experience.
Barchester provides a wide range of specialist care services for those with
complex needs and disorders, including Huntington’s Disease (known as HD).
The teams at Barchester truly understand
the unique challenges and presentation of
Huntington’s as a progressive disease. Should a
time come when there is a wish, or need, to come
into residential care for respite or longer-term
care, we offer a range of care options to suit the
needs of people with HD and their families.
ASSESSMENT LONG-TERM CARE Juvenile Huntington’s Disease Young Adults Weekend Certificated Course in
An assessment stay allows our staff to assess and Longer-term care is offered to people who need Family Weekend Saturday 24 to Huntington’s Disease for
monitor all aspects of well-being, while suggesting on-going specialist support and services to help Friday 1 June to Sunday 25 March 2018 Healthcare Professionals
useful changes and strategies to help a person with them get the most out of life. As the person with Sunday 3 June 2018 Holiday Inn, Telford Courses in London and
HD maximise their independence – helping them to HD journeys towards the final stages of the disease Calvert Trust, Keswick, Liverpool, dates TBC
we have the skills and expertise to help them through. Lake District
live their life, their way, for longer.
RESPITE Our weekend for families living Our dedicated weekend for Our unique training course is
A respite break can give carers a well-earned rest with Juvenile Huntington’s young people gives those aged 18 an essential development event
Millaton Court – part of Kernow House Care
whilst offering the person living with HD the disease (JHD) welcomes all the – 35 the chance to come together for healthcare professionals
Centre in Launceston – is run by General Manager, family – the young person with to hear talks from Huntington’s involved in supporting patients
opportunity to spend time with others experiencing Careen Harris (a HD Specialist and part of the HD JHD, parents, carers, brothers experts, get involved in with Huntington’s disease. It’s
similar challenges. Regular time away from caring Association) and her team of highly skilled nurses, and sisters. The weekend gives workshops and meet others with your chance to meet fellow
responsibilities enhances the quality of time spent carers and care practitioners. Their service meets families the chance to meet similar experiences. The weekend professionals, develop a deeper
together, which can be invaluable in helping to the needs of individuals at different stages of the others in a similar situation, while welcomes people who are at risk understanding of the illness,
maintain care given at home. We find many families disease and understand that life with HD is very also enjoying a great weekend full and not sure if they want to be share ideas and discuss the
benefit from regular, planned respite stays that much a family affair. They work closely with the of exciting activities. tested for the Huntington’s gene, management of complex
enable the person with HD to become familiar with as well as those who have already situations. You’ll learn from
Regional HD Advisor whose role is to support
a specialist care team and environment, something Children can take part in a range tested either positive or negative. Huntington’s disease experts and
people and their families in the community with HD.
of activities suitable for all ability Partners are welcome to come gain valuable insight to enhance
they can rely on as their needs change.
levels, including horse riding, along too. your practice.
archery, canoeing, rock-climbing,
sailing and swimming. It’s also a
chance for parents and carers to
To find your local Barchester care service, or for find out more about JHD from
more information on specialist care services, visit: specialists in Huntington’s disease A date for your diary
care and share experiences
with other parents. There’s also Huntington’s Disease
www.barchester.com/huntingtons a themed fancy dress party on Awareness Week
Saturday night to give everyone 14 – 18 May 2018
the chance to relax and enjoy
themselves with new friends. Keep an eye on our website in the
spring to find out how you can
get involved to raise awareness
24 25 of Huntington’s disease.EVENTS ARTICLE HEAD
A date for
Reflections from your diary
Family Weekend
Cath Stanley, and AGM 2018
Chief Executive 12 – 14 October,
Radisson Blu Hotel,
“This year’s family weekend East Midlands Airport,
saw a change in venue to the Derby
Family
Radisson Blu, East Midlands. The
general agreement from families
was that it was a good move, read and written by 15-year-old with situations and a research
Weekend with much better facilities and
space. Friday night offered the
Lauren Tuhill. On Saturday we
heard from a variety of speakers
update. Saturday night gave
the opportunity to walk the
2017
opportunity to meet old friends on topics including an update red carpet to our ‘night at the
and also new, with lots of new on the work of the charity, movies’ themed evening. With
families attending. Great hilarity some practical advice about a wide variety of workshops on
was had with a play dough claiming benefits, a motivational Sunday, it was all too soon time
quiz, and a very touching poem, speech about how to help deal to go home.”
Family
weekend
highlight
Feeling isolated is one of the it’s like to live with Huntington’s. set up her own consultancy – and love pattern and habit and
biggest challenges people Until I was 40, for most of my life eventually wrote her first book, sometimes they can be over
with Huntington’s tell us about
regularly, so each year we Redefining I had been either dealing with
the symptoms of the disease or
Your Life, Your Way. protective.
bring people from across the
country together at our Family your story: visiting nursing homes. It’s so easy
to allow yourself to be defined by
“And if I can do it anyone can,”
Paula told the conference. “I
4
Really think about
what brings you joy and
Weekend and AGM.
your life, your this terrible disease.” left school with virtually no
qualifications, never had a degree,
happiness and do more of it.
Practicing gratitude for what
The gathering gives people the
chance to let their hair down in
way Despite her family history,
Paula has never been tested for
and felt like an imposter for most
of my career. Who was I to write a
Paula’s
5 top tips
we have rather than being sad
about what we don’t naturally
an environment where everyone Executive coach, therapist and Huntington’s and has no plans book?” for changing moves us into a more positive
understands and meet others author Paula Meir has a passion to do so. She now runs a private your story frame of mind. Think of one
facing similar experiences. for helping people to be the therapy practice in Norwich and Paula lives by her favourite quote thing every day you are grateful
It’s packed full of information best they can possibly be. She London and insists that whatever by writer Joseph Campbell - You for!
sessions, workshops and has over 20 years’ experience in the circumstance, people have have to be willing to let go of the
presentations, with a chance to a global corporate environment the power to shift their thinking life you have planned, in order to It’s easy to focus on your If you ‘let go’ of what isn’t
hear from Huntington’s disease as an HR Director and now and live a more fulfilling and receive the life that is waiting for
1 limitations and be defined
5 helping you or serving you,
experts and plenty of time to consults independently. She happy life. you. by them – focus on what you you can make room for more
chat with new friends. is also a master practitioner in can do and start opening up positive thoughts and actions.
Neuro Linguistic Programming, She explained: “The biggest She combines this mantra with a possibilities. We can be limited by thoughts,
For those who couldn’t make qualified executive coach and inhibitor of us creating and living technique based on storytelling most of which don’t turn out to
it to the weekend this year, wrote a book earlier this year the life we want to is the story to help people improve their Don’t assume you can’t be true or accurate.
our keynote speaker, Paula called Your Life, Your Way: a we tell ourselves.” She told the lives. She said: “Many people are
2 do something until you
Meir, shares advice from her practical guide to getting your audience how Huntington’s governed by a model of thinking try – even small steps of trying
inspirational presentation about s**t together. Paula is no stranger had defined her story for the in which life experiences lead to something new or different
taking control of your story. to Huntington’s – her mother first 40 years of her life. “I had choices, which then lead to our move you in a more positive
and brother both died from the lived life fast, convinced that my life’s story.” Paula encouraged the direction.
Thank you to our event sponsors disease. life would be, to all intents and conference to think differently. Get your copy of
Exemplar Health Care, Elysium purposes, over by my mid-forties.” “Define what you want your Watch out for the ‘little Paula’s book,
Neurological, St Andrews Paula is passionate about An incident at work led her to story to be. This leads to a much
3 voice inside your head’ Your Life, Your Way:
Healthcare, PJ Care, Healthcare improving people’s lives – completely re-evaluate her life. greater number of choices, and that might try to dissuade
a practical guide to
Matters and Repose. especially in the Huntington’s She left her job and decided to that then leads to more positive you from thinking or doing
community. “I understand what go it alone. She read, trained, and experience, regardless of the something differently. Our brains getting your s**t together,
cards you have been dealt in life.” from www.hda.org.uk/shop
50% of the proceeds
will go to the HDA
26 27BRANCH FOCUS ARTICLE HEAD
Spotlight
on….
Newcastle
Up and down the country, local Huntington’s Disease Association
branches and support groups bring people together – a cup of tea, The Newcastle branch committee
Christina Bage (back), Joanne
a chat, a collection in a supermarket. Each of the 57 groups, all
run by volunteers, make a huge difference for people affected by “I feel part Somerville and Alan Bright
Huntington’s in their local community. They offer the chance to
meet others facing similar experiences and provide comfort and
of a family
companionship to those who need a listening ear and a shoulder
to lean on.
where everyone Members of the branch lit up the
Gateshead Millennium Bridge in
Each edition we’ll be learning more about one of these groups –
understands.” pink and green for Huntington’s
Disease Awareness Week
first up is the Newcastle branch.
Joanne: I’ve been involved with bridge with banners, balloons, and helping them to access local
the HDA for many years. When buckets and leaflets to talk to support. They can meet others
I moved to the North East five the public about Huntington’s. who understand and make
years ago I contacted the branch. We had an information stand at lifelong friendships.
Everyone was so lovely and made the local library and volunteers Newcastle branch members get
me feel so welcome. in Newcastle town centre with C: Our committee are all together once a month
buckets and leaflets talking to brilliant and very supportive.
How often do you meet and passers-by. Lighting up the bridge Our members know that we are
what kind of things do you do gained lots of attention and there for them, whatever the
when you get together? many people asked us questions. problem. We are like a close knit
C & J: We meet once a month at The Light it up for HD campaign family. HDA branches and
Walkergate hospital, usually for was a huge success – everyone
support groups meet
about two hours. In the first hour from the branch got involved I’m training to be a counsellor
up and down the country.
we have a chat over coffee. Our and there was a great feeling of so my role as chair helps with
local Specialist HD Adviser John community spirit. this. Some members like to
To find your nearest
The Newcastle Huntington’s Joanne and Christina tell us how Gregor usually arranges speakers talk. Some people are seeking group visit
Disease Association branch they became involved and what to come along. Recently we’ve How has being involved with counselling but want to talk www.hda.org.uk/
began in 1993 after founder the group gets up to. had workshops on mindfulness, the branch helped you and your to someone who knows about branches
Christine Baines lost her mother first aid, financial advice, and the branch members? Huntington’s and understands.
to Huntington’s. She reached out How did you become involved new scheme of accreditation for J: It’s allowed me to stay Now my two nephews have
to see if there were others who with your local HDA branch? care homes. The second hour connected with the HD Huntington’s, I can use my
were going through a similar Christina: I got involved about is our formal business meeting community. I enjoy getting experiences and knowledge to
experience and was amazed that eight or nine years ago. Christine discussing fundraising, upcoming together with my HD friends help them and others. C: The group means a lot to
over 100 people turned up. The re-stood as chairperson and she events and information from and keeping up to date with me. We help each other, which
group is now run by a volunteer asked if I could help as secretary. head office. We have a summer information, events and research. What does the branch mean to means I get comfort from others
committee led by Christina Christine’s sister Dianne, who social where we all go out for a I feel part of a family where you? too. I feel very privileged to be
Bage, Joanne Somerville and passed away, was my sister-in-law. meal together. everyone understands. It’s given J: It gives me a sense of able to do this. Our Specialist HD
Alan Bright. They offer support She had the Huntington’s gene, me support and a place to go belonging and giving back to the Adviser John helps us enormously
for families and help to organise which was passed onto my two For awareness week, we lit up the to talk and share experiences. Huntington’s community. It’s a and we couldn’t do it without his
information days, children’s nephews who I now help. Gateshead Millennium Bridge It helps people who attend by big part of my life and who I am help and advice. The group can
activities and social events. in HDA colours. We stood by the reducing feelings of isolation as a person. It’s my family. only go from strength to strength.
28 29You can also read
