Huntington's Disease AssociationApr 28, 2025

The incredible Ladies Who Dare have done it again!

Recently, they took on an even bigger challenge — travelling to Dharamsala in northern India to trek for five days through the foothills of the Himalayas. Their goal was to raise £30,000 — and they smashed it, raising an amazing £38,000 for the Huntington’s Disease Association!

This year's fearless team includes Claire, Sam, Jess, Karen R, Karen B, Ceri, Fiona, Amanda, Lesley, and Chris, supported on the ground by Jan, Susanne, and Jane.

Thank you, Ladies Who Dare.

Huntington's Disease AssociationApr 27, 2025

Today is the day! Good luck to all our #LondonMarathon2025 runners! We'll be posting live updates across our social networks today! Make sure to tag us in your photos and wish them luck!

Huntington's Disease Society of AmericaApr 22, 2025

2025 NATIONAL VOLUNTEER WEEK

VOLUNTEER SPOTLIGHT:

Marcella Junco, HDSA-Albany Chapter, Board Member

Marcella Junco has been an HDSA volunteer since 2003, first serving on an event committee with the HDSA Greater New York Chapter. In 2005, Marcella moved back to Albany, New York, and started a committee with other volunteers organizing events for HDSA; later in 2011, under Marcella’s leadership, the group became an HDSA affiliate with Marcella serving as the Affiliate Chair. Through steadfast guidance and dedication, the affiliate achieved chapter status in 2017. Throughout her 20+ years of service to the HD community, Marcella has co-chaired events like the HDSA-Albany Chapter’s Team Hope event - “Fishy Frolic”, as well as the annual Corks & Forks Celebration of Hope, which her family helped create in 2013! Corks & Forks attracts many wine lovers from the Capital District, increasing awareness about HD and HDSA to a wider audience.

Thank you, Marcella, for your many years of dedication, energy, and creativity. You’ve been an inspiration to all of us!

Huntington's Disease AssociationApr 15, 2025

Natalie talks about her mum and Huntington's disease in our lifeline film. She talks about OCD, eating and how finding the right care home is essential.

Huntington's Disease Society of AmericaApr 17, 2025

Roche Shares Update on Tominersen and the GENERATION HD2 Trial

Roche has announced an update on GENERATION HD2, the trial testing the huntingtin-lowering drug tominersen for people with Huntington’s disease. After a planned safety review, the trial is continuing with no new safety concerns.

As part of this update, participants receiving the lower 60 mg dose will now switch to the higher 100 mg dose. While this change reflects what Roche believes is the most promising dose, it’s important to note that the study remains blinded and we won’t know whether tominersen is effective until final results are available in 2026.

👉 Learn more about what this means in the latest HDBuzz article: https://en.hdbuzz.net/427

If you have questions about the trial, please reach out to your study team or healthcare provider.

Huntington's Disease AssociationApr 17, 2025

HDHike sign-ups are live! Ready to take on a challenge this May?

Join HDHike and walk to raise awareness and funds for families affected by Huntington's disease.

Whether you take on a scenic route, a countryside trail, or just a local walk with friends, every step makes a difference.

https://ow.ly/WqWL50VzNHF

Huntington's Disease AssociationApr 14, 2025

It's 13 days until the #LondonMarathon and we're delighted to bring you another one of our London Marathon runners, Matt! Hear more on why he is running the London Marathon for #TeamHDA. Don't forget to wish him good luck and check out the link in our comments if you're able to donate to our team.

Huntington's Disease AssociationApr 10, 2025

👏 A huge thank you to Jacob for taking on the Paris Half Marathon in support of the Huntington’s Disease Association! 🏃‍♂️

Your incredible effort and dedication help raise awareness and funds for people affected by Huntington’s disease. We’re so grateful for your support!

If you're inspired by Jacob and would like to take on your next fundraising challenge, take a look at our website.

https://ow.ly/LbM250VxYOH

Huntington's Disease Society of AmericaApr 14, 2025

HDSA offers support groups across the country for everyone in the HD community - whether you're living with Huntington’s disease, caring for someone who is, at risk yourself, or have been affected as a young person or adult.

You're not alone, and there’s support available for you.

For more information about support groups, visit:https://hdsa.org/find-help/community-social-support/hdsa-support-groups/

Huntington's Disease AssociationApr 06, 2025

In memory of his beloved Granny, Eileen Brister, Hugo took on the challenge of a lifetime—climbing Mount Kilimanjaro to raise funds for the Huntington’s Disease Association. Battling illness and altitude sickness, he reached the 5,895m summit and raised over £3,000 for #TeamHDA!

Huntington's Disease AssociationApr 06, 2025

Have you ever had to explain Huntington's disease to a healthcare professional.

We want to hear from you!

Too often, people affected by Huntington's disease find themselves educating healthcare professionals about conditions. We're running a short survey to understand your experiences and what you wish professionals knew. Your voice will help us this May for Awareness month.

Take the survey now and make a difference. https://www.surveymonkey.com/r/7GLK35C

Huntington's Disease Society of AmericaApr 02, 2025

By participating in Power HD, you can provide insight into the life of an individual affected by the terrible disease for researchers and other research partners.

Learn more about Power HD today!

To join, visit:https://powerhd.org/

Huntington's Disease AssociationMar 23, 2025

Today is about taking a moment to appreciate the people who make a difference in the Huntington’s disease community—families, carers, researchers, healthcare professionals, and everyone offering support.

Living with Huntington’s disease isn’t easy, but small moments of kindness, connection, and understanding can mean so much.

💚 To those caring for a loved one—we see you.

💖 To those living with Huntington’s disease—you are not alone.

💚 To those working towards better treatments—thank you.

What are you grateful for today? Let’s share and celebrate the strength of our community.

#HDGrattitudeDay

Huntington's Disease AssociationMar 20, 2025

On Tuesday, the UK government announced its plans to reform the benefits system to deliver savings of five billion pounds by 2030. We’ve explained below how these changes could impact people living with Huntington’s disease and how you can give your views on the proposed changes.

Read more here https://www.hda.org.uk/news/disability-benefits-reform/

Huntington's Disease Society of AmericaMar 23, 2025

Learn how Factor-H is bringing help for today and hope for tomorrow to the most vulnerable within the HD community, and join us in amplifying this message. Like and Share this post to spread awareness.

🌎🧡#LetsTalkAboutHD #HDSAFamily#HDFamily🧡🌎

Huntington's Disease AssociationFeb 28, 2025

🔬✨ Celebrating Rare Disease Day! ✨

🔬 Genetic Alliance UK has launched two powerful initiatives:

📢 Rare Disease Day Report – Highlighting the ongoing unmet needs in the rare condition community and calling for a new UK-wide strategy.

📖 More than you can imagine: An Anthology of Rare Experiences – A moving collection of poetry, stories, and art sharing real experiences from the rare, genetic, and undiagnosed communities.

Huntington's Disease AssociationFeb 27, 2025

HAPPY ODDS AND SOCKS DAY!

We'd love to see a photo of you, your friends, family and colleagues wearing your silliest odd socks to help raise money for people affected by Huntington's disease.

Send your photos through any of our social media channels or whatsapp them to 07900 922536

Huntington's Disease Society of AmericaFeb 28, 2025

Rare Disease Day is HERE!

As we start celebrating Rare Disease Day, let's stand in solidarity to share our dedication and fight against Huntington’s disease with the world! Together, let's raise awareness as we continue to provide world-class HD resources to families across the country.

We are counting on you to help us reach our goal of $15,000 and unlock the matching gift challenge from an inspiring, anonymous HD family! This means every dollar you contribute today will be doubled, allowing us to raise $30,000 for HDSA programs, research, and family services, and make an even greater impact on the lives of those living with Huntington’s disease and their families.

Use the link below to donate:

https://app.dvforms.net/api/dv/29l94l

DNA Repair Key in Huntington's

Researchers have found that a protein linked to Huntington's doesn't properly fix DNA damage, which could lead to new treatments by targeting this repair process.

Depression and Suicide in Huntington's Disease

People with Huntington's often experience depression and suicidal thoughts due to emotional strain and loss of independence. Regularly monitoring these feelings can help prevent suicide.

Chorea in Huntington's Often Without Symptoms

Managing chorea in Huntington's can be challenging, as it often appears without clear symptoms. This can make early diagnosis and treatment difficult.

Atalanta Prepares RNAi Trial for Huntington's Protein

Researchers are developing a new therapy to reduce toxic protein levels in Huntington's patients by silencing the gene responsible for the condition. This approach aims to slow or stop the progression of the disorder.

Disco Fever at Madison Re-Prom Benefits HDSA

Funds raised at the Madison Re-Prom support people affected by Huntington's. The event helps provide services and research opportunities for those impacted by the condition.

New Insights Into Huntington's Fatal Brain Disorder

Researchers have found that the genetic mutation causing Huntington's expands slowly over decades, then rapidly, leading to brain cell death and symptoms appearing in midlife.

Huntington's Disease AssociationFeb 04, 2025

Iris talks about how she found out about Huntington’s disease in her life and how she got tested.

Did you know our You are Not Alone video has been nominated for a Smiley award, you can find out more by clicking the link in our comments.

Huntington's Disease AssociationFeb 08, 2025

Have you heard about our ‘I have Huntington’s disease’ ID cards?

We can personalise them with your loved one’s name and emergency contact details. The card is perfect for a purse or wallet or put in a card holder on a lanyard (not provided).

Please email info@hda.org.uk with the following information:

💚Their full name

💚 Emergency contact name

💚 Emergency contact mobile number

💚 Emergency contact landline number

💚 Your address (to post the card to) ID cards for England and Wales only.

Huntington's Disease Society of AmericaFeb 07, 2025

Canton bound!

Congratulations to the legendary Antonio Gates on his induction into the National Football League Hall of Fame!

Thank you for your support of HDSA, the HDSA San Diego Chapter and the HD community, throughout the years.

Enjoy the gold jacket!

Atalanta Raises Funds for Huntington's RNAi Therapy

Atalanta Therapeutics is developing a treatment that aims to reduce the harmful protein causing Huntington's. This involves using RNA interference to silence the gene responsible for the protein's production, with plans to start clinical trials soon.

Armagh Woman Raises Funds for HD Charity with 100-Mile Walk

Janice McCartney, affected by Huntington's Disease, is walking 100 miles to raise funds for a charity that supports her and others. She has already raised over £1,300, highlighting the charity's crucial support services.

Huntington's Disease AssociationFeb 01, 2025

"You haven’t inherited the faulty gene.”

These were the words that changed Niall’s life. After two decades of believing he was positive for Huntington’s disease, genetic testing revealed he was negative.

Niall shares his journey of navigating uncertainty, making family decisions, and finding support through genetic counselling. His story highlights the emotional complexity of testing and the importance of having the right support network. Huntington’s is still a big part of Niall’s life.

He’s using his experience to raise awareness and fundraise for the Huntington’s Disease Association. Read more about his story by clicking the link in our comments.

Huntington's Disease AssociationFeb 03, 2025

Deciding whether to take a genetic test for Huntington’s disease is deeply personal and can feel overwhelming. Some people prefer to know for certain; others choose to wait.

This decision is yours alone, and it’s one to think about carefully—it can affect not only your life but also your loved ones. Remember, once you know your results, you can’t unlearn them.

Take your time and don’t rush.

Have you or someone you know faced this decision? Share your thoughts or experiences in the comments to help others who may be considering testing.

See the link in our comments for more information

Huntington's Disease Society of AmericaFeb 03, 2025

🎉 Exciting News! 🎉 We’re thrilled to announce Amy Gray as the new President & CEO of the Huntington's Disease Society of America (HDSA), effective immediately! With over 20 years of experience in fundraising, operations, and patient advocacy, Amy’s leadership will enhance our mission to improve the lives of those affected by Huntington's disease. Welcome aboard, Amy—we can’t wait for this new chapter! Read the full press release: https://hdsa.org/wp-content/uploads/2025/01/CEO-Press-Release.pdf 💙 #HDSA#HuntingtonsDisease#Leadership

Atalanta Therapeutics Secures $97 Million for CNS Therapies

Funding supports clinical trials for Huntington's, using RNAi to reduce harmful gene expression, potentially improving symptoms. This approach targets previously inaccessible brain regions.

DNA destabilizing proteins linked to HD progression

Proteins that normally fight viruses may destabilize DNA in Huntington's, leading to genetic changes that contribute to the progression of the condition.