Latest in research news from the European Huntington's Disease Network - Huntington's Disease Association
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Winter 2018
Latest in research
news from
the European
Huntington’s
Disease Network
The 2018 European Huntington’s
Disease Network conference
took place in Vienna from 14
– 16 September. This fantastic
gathering brought researchers,
clinicians, families and patient “I’m always heartened by
and how we slow disease
associations together to learn
about the latest news in
progression. Talks looked at the the closeness of the
importance of having an enriched Huntington’s Community
Huntington’s research. Our Chief
environment and regular exercise,
Executive, Cath Stanley, shares
which may have an impact upon and this Conference was no
updates from the conference.
progression of the disease. different. I came away with new
“The opening session of the EHDN knowledge, new contacts, new
“The definition of Juvenile
conference was a reminder that
with all the recent progress into
Huntington’s was discussed as friends and renewed optimism.”
often the person or child may
Huntington’s disease research it Steve Duckett,
be an adult whilst still displaying
is important to remember the family member
symptoms.
history and stories that have gone
before. It was pointed out that “The results of the Pfizer Amaryllis
it is 25 years since the gene was and Legato studies showed that
isolated. they had failed in their primary
goal to improve the motor that we were all waiting for –
“Gene therapy was the focus of
function. This is a reminder that the Ionis (now RG6042) trial
the days’ talks with researchers
scientific trials are just that - to and Roche Pharmaceutical’s
talking about both protein
test a theory that something announcement of the beginning
lowering and gene editing
might happen. Lessons will be of the recruitment of over 600
techniques. There was discussion
learned that may help further patients worldwide for the
about balancing realism against
studies to become successful. phase 3 trial. Trial sites have not
hope and the importance
yet been identified. RG6042
of having hope. Researchers On the positive side, Wave Life
has the potential to provide
talked about the importance Sciences showed a different
clinically meaningful effects on
of biomarkers – these are ways approach that really is cutting
disease progression in people
of measuring both disease edge and we look forward to the
with Huntington’s. This is just
progression and any benefit of outcome of the trial in patients
the beginning and there may
prospective treatment. which should hopefully be early
be challenges along the way but
next year.
“Further presentations focussed there is now real optimism within
on keeping brain cells functioning “The final session was the one the Huntington’s community.”
Top tips for a The home can be a hazardous environment for
Huntington’s someone with Huntington’s, but there are many
ways to minimise risks and make things easier
home around the house. There are things you can do at
little or no cost that will make a big difference to
someone living with Huntington’s disease.
Occupational therapist Alex Fisher shares her tips on
aids and adaptations that can help life in the home.
Maximise light and space Specialist equipment isn’t Introduce changes early
People with always necessary Try to introduce aids
Huntington’s have You don’t need to and ideas early on while
different perceptions spend a fortune the person still has
of space, so make getting specialist reasoning. If you make
sure there’s plenty of light and a equipment. Things like these changes part of a routine,
clear space around them to help a simple sports cup with a one it will be easier to keep them in
minimise accidents in the home. way valve will help stop spills place when they are needed in
when drinking, and will limit the the future.
Think ‘house of hazards’ amount of liquid being swallowed
Decluttering can help at once, making it easier to keep Enrichment
maximise light and hydrated. People with
space in the home, Huntington’s need
making things easier mental stimulation, so
to access and helping to reduce keep the place homely
the risk of falls and accidents. with pictures and mementoes,
Start thinking of what could even when decluttering. Try and
be a hazard to a person with make a space with no distractions
Huntington’s, such as sharp for activities they enjoy, such as a
corners and trip hazards. Corners crossword, puzzle or watching a
of furniture can be protected movie.
using corner bumpers, which can
be bought from shops like Ikea.
Use cable ties to gather loose
wires and make sure any rugs
are stuck down securely with rug
tape to minimise trips and falls.
Fire
Some fire services can provide disabled
or vulnerable people with fire retardant
blankets, duvet covers, smoke alarms and other
fire prevention equipment. This is helpful for people
ICE
with Huntington’s who like to smoke in bed. Contact
In Case of Emergency (ICE) is an
your local fire service to see what they provide.
easy way for first responders such as
You can also let them know if someone with
paramedics and police to contact your next
a disability lives at the address, which may
of kin. Record their name and number in your
help if they attend an emergency
mobile phone in a contact called ICE as a way to
at your home.
help yourself in an emergency.
Voice controlled devices, such as Amazon Echo,
can also be set up to ring someone in your
mobile contacts when asked. This can be helpful
for people in the earlier stages of Huntington’s
as it’s controlled by speech rather than
needing to use your hands, and devices can be
positioned around the home for easy access. Find more information and advice on
living with Huntington’s on our website at
www.hda.org.uk
Fundraising success stories from #TeamHDA
Do it for
What motivated you to start
fundraising?
Dom
Unfortunately the disease
made Dom feel depressed,
consequentially we not only
Our community fundraiser wanted to help raise money,
Hannah Longworth met up with we wanted to show Dom how How did it go?
Suzanna Mavity to find out more important he was to all of us. It was a challenge! But 49 people
about the amazing fundraising went up and 49 came down! The
ventures she, her friends and What did you do to raise funds? event was emotional to say the
colleagues are involved in, their We are known in the industry for least and it certainly took some
inspiration and progress to date. our nights out rather than fitness work but every single person was
related events! So we decided proud to have taken part.
What is your connection to if we were going to raise a lot of
Huntington’s? money it needed to be something How much did you raise?
Our friend Dominic was different and challenging. So We originally wanted to raise
diagnosed with the disease we took 49 people up Snowdon £50,000, but to date we are on
last year. and raised both individual and £69,000 and still going, we are
corporate sponsorship. striving for £100,000.
Lindsay’s Great North Run
Kerri Mullaney with
Kate Davis (centre)
and Kelly Norton
(right) Lindsay Ford was one of 31 longer work and activities of
#TeamHDA runners who took daily life became more difficult.
Glamourous part in this year’s Great North I reduced my working hours and
fundraising ball Run. This epic team raised a we began making the most of
raises thousands huge combined total of over life with lots of trips and holidays
Dedicated fundraiser Kerri £24,000. Lindsay shares her making memories with our son.
Mullaney gathered family and story about why she took on the
“I completed the half
friends together in Northallerton 13.1 mile challenge in aid of the
marathon with Gary’s brother
to help her say ‘Balls 2 HD’ at a HDA.
Chris, who gave me words of
glitzy gala dinner, complete with “My husband Gary began encouragement along the way.
raffle, magician and live music. displaying Huntington’s It was a difficult run emotionally
Kerri said: “Huntington’s has symptoms about 6 years ago. and physically but we got to the
affected my family for generations Mainly mood swings and lack finish line together. Together we
and still continues to do so. of coordination at first but that raised nearly £3800. We are so
My father was the only one in was enough to confirm his grateful and overwhelmed by
six siblings not to inherit the suspicions that Huntington’s the support and generosity of
Huntington’s gene. He’s been a disease was rearing its ugly family friends and strangers.”
great inspiration within our family head again after seeing his late
Lindsay with her
to fundraise. mum suffer with the husband Gary
“When we were young we disease. (centre) and
believed that we were the only brother in law
“Gary struggled to Chris (right)
family in the area affected by cope when he could no
Huntington’s, but through our
fundraising we have met many
other families. The support
provided by the HDA is invaluable
to these families and without
fundraising this support would
not be available.
“We were honoured to have Kate
Davis from the HDA attend the
ball and give a deeper insight into
how funds are used to provide
support to anyone affected by
Huntington’s disease. We are
planning another ball for summer
2019.”
Meet our new trustee
r
Dates fo ry
We are delighted to welcome Steve Duckett to the Huntington’s
your dia
Disease Association’s board of trustees.
Steve brings with him a wealth of experience with a degree in
Microbiology and Genetics, a diploma in
Environmental health and prior experience
of leading a department dealing with The Inbetweeners day
public health, housing and planning. 16 February 2019 – London
Steve now cares for his wife who has An informative event for
Huntington’s disease and recently those aged 35-45 with
became chair of the Dorset HDA Huntington’s in the family.
branch. He is also an active Discussion topics will include
member of HD Voice, the HDA’s mind and body wellness,
patient engagement group and forward planning and there
HD Cope the global patient will be opportunities to share
engagement initiative. He will experiences.
certainly be an asset to the Young adults’ weekend
Association. 23 – 24 March 2019 – Telford
A weekend for those aged
18-35 with Huntington’s in the
Helpful hints
family. Two days of informative
workshops, talks and an
opportunity to meet others
facing similar dilemmas and
Innovative ‘red bags’ you think they would benefit
decisions.
that help care home from this speak to the care home
residents admitted to manager.
hospital be discharged
quicker are being rolled out If you paid to register Huntington’s di
across the country. The bags, a Power of Attorney sease
Awareness wee
which contain key paperwork, in England or Wales k
13 – 19 May 2019
medication and personal items between 1 April 2013 – Shining a
light on Huntin
like glasses, slippers and dentures, and 31 March 2017, you’re owed a gton’s.
are handed to ambulance crews refund of up to £54. You can Look out for info
rmation about
by carers and travel with patients claim it online at www.gov.uk/ planned activiti
es and how you
to hospital where they are then power-of-attorney-refund or call can get involved
on our website
handed to the doctor. If your 0300 456 0300. The deadline early next year.
loved one is in a care home and for applying is 31 January 2021.
Certificated course in
Huntington’s disease
21 – 23 May 2019 – Liverpool
Get in touch
For advice and support or to speak An essential course for any
healthcare professionals
to a Specialist HD Adviser
covering topics such as
Email: info@hda.org.uk genetics, neurology, behaviour
Phone: 0151 331 5444 and communication.
Web: www.hda.org.uk JHD weekend
31 May – 2 June 2019 –
Calvert Trust Lake District
Get involved An activity weekend for
Become a fundraising volunteer children or young people
Email: fundraising@hda.org.uk affected by Juvenile
Phone: 0151 331 5445 Huntington’s and their
Web: www.hda.org.uk /fundraising families.
For more information or to
book onto these upcoming
events, please visit our
website www.hda.org.uk
Registered charity no: 296453 A company limited by guarantee.
or contact us on
Registered in England No. 2021975 info@hda.org.uk or
0151 331 5444.
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