Huntington'S Disease Association

The Guardian’s recent Science Weekly podcast features a fascinating insight into the genetics behind Huntington’s disease. Hannah Devlin speaks to our scientific adviser, Dr Ed Wild, alongside research patient Roger and his wife Brenda about their involvement in research.
Listen here: bit.ly/2C9YYxY

“Kate was often late for school. She frequently over slept after being woken up three or four times in the night by her mum – she’d fall out of bed and Kate would have to help her get back in. Her dad liked to drink, so he’d fall asleep on the sofa and didn’t wake up in the morning either. Often there wasn’t food in the house to make breakfast, and if she hadn’t done the washing her uniform was dirty. But she often felt so tired she couldn’t be bothered.”
Cath Stanley, our Ch...ief Executive, will be sharing the stories of children like Kate who are growing up in families affected by Huntington’s at ‘Medicine and Me: the hidden victims of Huntington’s disease’ – a conference organised by The Royal Society of Medicine and the HDdennomore initiative.
Cath will join family members who will share their experiences of living with Huntington’s, as well as researchers, clinicians and healthcare professionals working in the field of Huntington’s disease.
The ‘Medicine and Me’ events series gives a voice to patients and their carers and outlines best practice and future updates of important conditions.
Find out more about the conference at: bit.ly/2LCOTc7
See more

Scientist Dr Emma Yhnell is researching how playing specially designed computer games might help people who are living with Huntington's disease. Read more here: bit.ly/2P00ggj

This #NationalCupcakeWeek, help us say Cake That, HD!
Bake it or buy it to help raise funds and awareness - find out more and sign up for your free Cake That, HD! fundraising kit at bit.ly/2OHDQAg

This October, come and join us at our annual Family Weekend – a unique conference for everyone affected by Huntington’s disease.
You’ll hear talks from inspirational speakers and the latest research updates, as well as your choice of workshops covering important topics like genetics, aids and adaptations, understanding behaviours, relaxation techniques and talking to children about Huntington’s. We’ve got a special programme of fun and games for children, led by our speciali...st youth workers, and plenty of opportunity for adults to let their hair down in a relaxed and friendly environment.
Whether you’re living with Huntington’s, you’re at risk, or you’re caring for a loved one, it’s a great chance for anyone affected by Huntington’s to come together to learn, share and meet others who can relate to your experiences.
For more information and to book your place visit: bit.ly/2nHHnmC
See more

The pharmaceutical company Roche has been given priority designation from the European regulator for their treatment of Huntington's disease. Read more here: https://bit.ly/2vvUN9I

Our website is now back up and running. Thank you for your patience.

Our website is currently down. We are working to fix the problem as quickly as possible. We apologise for any inconvenience caused.

If, like Deborah, you'd like to take on the Great Wall of China trek, now is the time! Charity Challenge are offering £50 off the registration fee with the code CHINAHDA50 which is valid until the end of August.
Follow this link for more details and to book your place: bit.ly/2mOprHd

Today we're wishing Fiona Sturrock, our specialist adviser for Kent, Sussex, Bromley, Bexley and Dartford, a very happy retirement.
During her nine years with the HDA, Fiona has work tirelessly to support the people in her area and built great relationships with Guy's clinic, nursing homes and local support groups. She has led our London Marathon cheering squad for many years, spurring our runners across the finishing line. A much needed friendly face on the final mile of the course!
Thank you Fiona for all your hard work and very best wishes for the future.

Congratulations to our fantastic fundraisers who were nominated in this year's Huntington's Disease Association Volunteer Fundraiser Awards! We celebrated their achievements at our awards night in Liverpool this weekend. Find out who the winners were here: bit.ly/2NWOxPM
Thank you to each and every person who has taken the time to raise funds and awareness for Huntington's disease - you're all superstars!

Congratulations to all our nominees and winners at this year's volunteer fundraiser awards. #HDAVolAwards18

Do you remember when BBC's Casualty ran a Huntington's disease story line involving Dr Ethan Hardy? In tonight's Holby City, Ethan makes a special guest appearance where more details about his Huntington's diagnosis are revealed.
You can watch this tonight on BBC one at 8pm or catch up via the BBC iPlayer: https://bbc.in/2zn7eJr

Do you want to help with Huntington’s research but don’t have the gene?
A research team at University College London are looking for participants who do not carry the Huntington’s gene (known as control patients) to take part in the Huntington’s Disease Young Adult Study (HDYAS).
This research investigation is for people aged 18 – 40, and the team are particularly interested in hearing from people under 30. Participants will have an MRI scan, blood tests and undergo cognitive... tests. They’ll also have a lumbar puncture to collect cerebrospinal fluid (CSF) – the fluid found in the brain and spinal cord. The study takes a day and a half and all expenses will be paid for.
If you’re looking to show your support for friends or family who are affected by Huntington’s disease but you're not sure how to help, this could be your opportunity. For more information of the study and how to take part visit: https://bit.ly/2u7xXog
See more

We have been asked by a team of market researchers who are working on behalf of a pharmaceutical company to help them understand what it is truly like to to live and care for someone living with Huntington's.
We urgently need people so please contact Joy Smith by calling 01883 349549 or 07720 072733 or emailing joy.smith377@gmail.com
Telephone interviews will now be possible.

Congratulations to the North Staffordshire HDA Branch who celebrate 25 years of supporting local families on 18 July 2018!
They work tirelessly in their support of local families and continue to find inspirational ways of raising money. The branch will be holding a celebration to mark this impressive milestone from 7.45 - 9pm on Wednesday 18 July at Hanley Community Station, Lower Bethesda Street, Stoke-on-Trent.
If you would like to attend this get together to meet, share and celebrate please email info@hda.org.uk or call 0151 331 5444.

Want to improve your knowledge and skills about Huntington's disease care?
Our Certificated Course in HD is essential for any health or social care professional working with people with HD. Our next course runs in London on 20-21 November 2018 - for more information visit:
https://www.hda.org.uk/…/a-certificated -course-in-huntingto…

We have been asked by a team of market researchers who are working on behalf of a pharmaceutical company to help them understand what it is truly like to to live and care for someone living with Huntington's.
Please follow the link for more information:
https://www.hda.org.uk/…/huntingtons-di sease-market-researc…

Would you and your siblings like to take part in a photography project to show what life is like for families living with Huntington's?
Professor Paul Wenham Clarke, a photography professor from the Arts University Bournemouth, is looking for volunteers for his photographic project about siblings where one has a genetic condition. The project is called Our Human Condition and he is looking for siblings who are willing to be photographed and then interviewed about their live...s together. He is interested in hearing about how your relationship has changed over time.
Find out more about the project and how you can get involved on his website: www.wenhamclarke.com/our-human-condition< br> To see examples from the project and read a full description, take a look at his facebook page - www.facebook.com/Our-Human-Condition-Phot oProject-Paul-Wen…/
See more

Without the help of hda in particular Jackie gallop and poppy hill I don't quite know what would have happened to my friend Lisa who was miss diagnosed for years and once diagnosed, neglected. A wonderful charity, helping sufferers and never forgetting their families. Thank you hda for all that you do xx

Very sorry, Margeret. Fingers crossed for the kids. Does anyone know if the recent headlines about stem cell therapy 'curing' MS has relevance to HD?

They give invaluable information help and support in all areas. Their experience with HD helps families to be signposted to other helping agencies

That place is a great way to get some good info on it and make a difference to all who has it, cose after all that situation is a live change. Tanks for spending time in here tanks again

Thankyou for all you do for the families of this disease. I hope my three peaks challenge for HDA goes one step towards helping the amazing work that goes on �

Thank you for all you do for people effected by this terrible disease

So helpful and always happy to listen. Thanks guys especially Hannah x

Just been confirmed as having HD so my children are tossing the coin as I write this please let it be heads

Great cause that I'll try and raise money for every year. 50/50 if I've got this awful disease and hopefully the money I raise will play a small tiny part in finding a cure

A charity close to my heart thank you for your support.

Without the help of hda in particular Jackie gallop and poppy hill I don't quite know what would have happened to my friend Lisa who was miss diagnosed for years and once diagnosed, neglected. A wonderful charity, helping sufferers and never forgetting their families. Thank you hda for all that you do xx

Very sorry, Margeret. Fingers crossed for the kids. Does anyone know if the recent headlines about stem cell therapy 'curing' MS has relevance to HD?

They give invaluable information help and support in all areas. Their experience with HD helps families to be signposted to other helping agencies

That place is a great way to get some good info on it and make a difference to all who has it, cose after all that situation is a live change. Tanks for spending time in here tanks again

Thankyou for all you do for the families of this disease. I hope my three peaks challenge for HDA goes one step towards helping the amazing work that goes on �

Thank you for all you do for people effected by this terrible disease

So helpful and always happy to listen. Thanks guys especially Hannah x

Just been confirmed as having HD so my children are tossing the coin as I write this please let it be heads

Great cause that I'll try and raise money for every year. 50/50 if I've got this awful disease and hopefully the money I raise will play a small tiny part in finding a cure

A charity close to my heart thank you for your support.