26.2 miles through the streets of London. 80,000 people cheering. And a reason to run that means everything. Applications are now open for #TeamHDA at the 2027 TCS London Marathon and we want you on the start line with us.
When you join #TeamHDA, you don't just get a place in the world's greatest marathon. You get:
👟A personalised running vest with your name
📦A fundraising toolkit and welcome pack
💬Access to our private #TeamHDA WhatsApp group
🤝 Pre-race meet-ups with the team
🎁 Race day support and a runner goody bag
📞 Ongoing support from our fundraising team every step of the way
The application deadline is 6 July at 9am. Due to high demand, the 50 strongest applications go forward to a telephone interview — so tell us your story and why you want to run for HDA.
If you get a ballot place? You can still join #TeamHDA — no minimum sponsorship required. Email [email protected] to get your fundraising pack.
👉 Apply now using the link in our bio.
What do you wish people knew about Huntington's disease?
This May, we're creating a community wall filled with the real stories, invisible challenges and honest experiences behind Huntington's disease.
Too often, people affected by Huntington's disease find themselves explaining the condition to the public, employers, schools and even healthcare professionals.
Share what you wish people knew about Huntington's disease and add your voice to our community wall.
Did you know that Huntington's disease can affect the way someone speaks, finds words, and even starts a conversation?
Communication changes are one of the lesser-known aspects of Huntington's disease — and they can be really difficult for families and carers to navigate.
This May, we're going #BehindTheGene, answering a question every day about Huntington's disease. Today we're looking at how Huntington's affects communication, what changes to expect, and — most importantly — how you can help.
Swipe through to find out more 💚
"The most fun part was seeing all the silly sock combos and knowing I made that happen with the help of my coach and headteacher. It was great to feel a part of something so important to me."
Every single day this month, we're answering a question about Huntington's disease. Today's question is what happenes when someone with Huntington's disease ends up in hospital. It can be a very challenging environment for someone with the condition, and the people caring for them there do not always have the knowledge they need.
Our hospital tips leaflet provides useful information for hospital staff on how to care for someone with Huntington's disease.
"They said he doesn't have Huntington's disease, it's a mental health problem."
Dawn was in a psychiatric ward begging professionals to speak to her husband's neuropsychiatrist.
Her husband Rob had Huntington's disease. But because his symptoms didn't match people's expectations of the condition, the family were left fighting to be believed.
Too often, Huntington's disease is only associated with movement symptoms. But cognitive and psychiatric symptoms can appear long before visible movement changes.
Families affected by Huntington's disease are still finding themselves educating professionals about the condition while trying to cope with its impact at home.
This Huntington's Disease Awareness Month, we’re sharing the untold stories behind the gene and the invisible challenges families face every day.
Read Dawn’s full story in our bio
This May, we're going #BehindTheGene, answering a question every day about Huntington's disease.
Today's question is about work. Many people with Huntington's disease are diagnosed while they are still in employment, and the thinking changes that come with the condition can affect performance long before physical symptoms become obvious. Knowing your rights, and knowing that your employer has legal obligations, can make an enormous difference. If this is useful to someone you know share this
Carers in someone's life hold knowledge that is invaluable. They know how the person reacts, what causes them distress and how to help them feel calm and safe.
Nikitta explains how this was important when caring for her Mum.
On the 6 May we launched our professional guides to help healthcare and social care professionals better understand Huntington's disease and the people living with it. You can find them here on our website: https://tr.ee/skwxBu
This May, we're going #BehindTheGene, answering a question every day about Huntington's disease.
Today's question is a practical one, but it matters enormously. Because Huntington's disease is a progressive condition, there will likely come a time when a person can no longer make decisions about their own finances or welfare. Setting up a lasting Power of Attorney while they still have capacity means their wishes can be protected, and the people they trust can act on their behalf. It is one of the most important things a family can do, and one of the things most often left too late.
"She never complained. She never showed fear. She was the bravest person I've ever known."
Lisa's daughter Becky was diagnosed with Juvenile Huntington's disease as a young mum. What followed were years of fighting for basic care including a wheelchair and a duvet. Becky passed away in 2021. But Lisa's determination that no other family should face what they did? That hasn't gone anywhere.
This May, for Huntington's Disease Awareness Month, we're sharing the untold stories from #BehindTheGene.
Read Becky and Lisa's story in full using the link in our bio.
This May, we're going #BehindTheGene, answering a question about Huntington's disease.
Today's question is about something quietly remarkable that some people with Huntington's disease are choosing to do while they still can. As the condition progresses, speech can deteriorate. But technology now makes it possible to record and preserve a person's natural voice before that happens, so they can continue to communicate in their own voice even when speaking becomes difficult. It is called voice banking.
If this is new to you share it.
