Your Voices, Heard: What Our Community Told Us About HD Therapies

At Help 4 HD International, we believe the people living with Huntington's disease — and the families who love and care for them — should have a real seat at the table when decisions get made about treatments. That's why we created a survey called Your Preferences and Perspectives on Potential Therapies, and it's why we're so proud to share our whitepaper built from your answers.

More than 200 of you took the time to tell us what matters most. Caregivers, people living with HD, and those who are at risk all shared honest, deeply personal thoughts about the treatments you hope for, the risks you're willing to take, and the symptoms that weigh on you the most. This blog post walks you through what we learned — in plain language, no science degree required.

What is this whitepaper, exactly?

Think of the whitepaper as a written summary of everything the community told us, organized so that it's easy for decision-makers to understand. We took 213 survey responses, sorted through them, and pulled out the biggest themes. Then we wrote it all up in a report we can hand to the people who shape the future of HD treatment — the FDA, pharmaceutical companies, and researchers.

In other words, when you answered our survey, your voice didn't just disappear into a spreadsheet. It became part of a document that speaks directly to the people with the power to bring treatments to your family faster.

A few things that surprised and moved us

There's a lot in the full report, but here are some of the findings that really stood out.

You're focused on the mind, not just the body. When we asked which symptoms most need treatment, psychiatric and cognitive symptoms rose to the top, right alongside a deep desire for treatments that could slow or stop the disease itself. So many of you told us that the emotional and thinking changes are among the hardest parts to live with — often even harder than the physical ones.

You're braver than a lot of people assume. We asked how you'd feel about different ways of receiving a gene therapy. IV injections were the clear favorite, which makes sense — they're the least invasive. But here's what struck us: even when we asked about a one-time brain surgery or monthly spinal taps, a strong majority of you said you'd be willing. That says something powerful about how much this community wants real options.

You know where your limits are. You were very open to manageable side effects — things like a controllable headache, dry mouth, or body aches. But when it came to severe or life-threatening reactions, the answer was a clear no from most people. This shows a thoughtful, balanced view: you want progress, but not at any cost.

You believe access shouldn't wait. More than 80% of you said that if a drug shows real benefit, the FDA shouldn't slow things down by demanding yet another lengthy trial. And an overwhelming majority — over 86% — believe that people who carry the HD gene but haven't been diagnosed yet should have the option to take a treatment. This community wants the door to open sooner, not later.

You want to be understood. One of the most honest findings: many of you feel that the companies running clinical trials don't truly grasp how much risk HD families are willing to accept. That's exactly the kind of gap this whitepaper exists to close.

Yes, this data is from 2024 — and yes, it still matters

We want to be completely open about something. This survey was conducted in 2024. But please don't think of it as old news sitting on a shelf.

We continue to use this data today, and we actively share it with the FDA, with pharmaceutical companies, and with researchers working on HD. Why? Because the voice of the HD community doesn't expire. What you told us about your priorities, your hopes, and the risks you're willing to take remains just as true and just as important now. Every time we sit across from a decision-maker, this data helps us make sure your perspective is in the room. It is a living tool in our advocacy, not a snapshot we've moved past.

Thank you — truly

None of this exists without you. To every single person who opened that survey and shared something so personal: thank you. Talking about symptoms, side effects, and the risks you'd accept for your family is not easy, and you did it anyway so that others might benefit. That generosity is the heart of this entire report.

We also want to thank the team who poured their time and care into creating this whitepaper:

Authors

• Katie Jackson, CEO of Help 4 HD International (lead author)

• Michael Sabado, CIO / Director, Help 4 HD International

Reviewers

• Katrina Hamel, CFO / VP, Help 4 HD International

• Tammy Miller, Director, Help 4 HD International

• Vicki Owen, Director, Help 4 HD International

Read it for yourself

We'd love for you to read the full whitepaper and see your community's voice reflected on every page. And if it moves you the way it moved us, please share it — the more people who understand what HD families want and need, the closer we get to the treatments this community deserves.

Together, we are stronger. Together, we are heard.

With love and gratitude, The Help 4 HD International Team