No Huntington’s disease treatment has been fully approved yet—but for the first time, real disease-modifying therapies are close.
Gene therapies like AMT-130 and other emerging treatments are moving through the pipeline, and history shows that when these kinds of advanced therapies reach patients, they are often extraordinarily expensive. Based on current data and comparable treatments in other diseases, costs could reach millions per patient.
We cannot wait until approval day to start preparing.
Donate
Your donation helps us build treatment access before the crisis arrives. No Huntington’s disease treatment has been fully approved yet, but we know therapies are coming—and based on current data and comparable treatments in other diseases, we know they are expected to be extraordinarily expensive.
Our primary focus is funding direct treatment access: payments made directly to hospitals, treatment centers, and licensed providers when therapies become available. We are raising funds now so that cost is never the reason someone loses their chance at treatment.
Volunteer With Us
Help us build a future where access to Huntington’s disease treatment does not depend on a family’s ability to pay—or navigate a complicated system.
We welcome volunteers who can help with awareness, outreach, events, social media, donor support, and community education. You do not need to be an HD expert. Whether you have a few hours to give or want an ongoing role, your time and skills can make a difference.
Board of Directors
We welcome applications from dedicated, creative, and determined individuals who share our passion for making HD treatment accessible. We are looking for people ready to contribute their time, expertise, and ideas—and take an active role in guiding the Foundation’s growth.
Experience in nonprofit leadership, fundraising, finance, healthcare, advocacy, or community engagement is valuable, but not required. We also welcome the perspectives of people living with HD and those who love and support them.
Grant Research and Writing
Help us identify funding opportunities and develop compelling grant applications. We welcome support with researching potential funders, writing proposals, managing deadlines, and preparing reports that show the impact of our work.
Fundraising and Partnerships
Help build relationships with donors, businesses, community organizations, and potential sponsors. Volunteers can support fundraising campaigns, organize events, or introduce partners who share our commitment to treatment access.
Website and Technology
Help maintain and improve our WordPress website, keep information current, and make our online resources easy to use. We also welcome help with forms, accessibility, and the tools that support our daily work.
Communications and Community Education
Help turn complex information into clear, useful resources. Opportunities include writing, editing, graphic design, social media, and developing educational materials about HD treatment progress and access.
Advocacy and Resource Navigation
Help us follow developments in treatment access, organize advocacy efforts, and identify resources for families. Experience with healthcare systems, insurance, patient advocacy, or public policy can be especially helpful.
Volunteer Coordination and Operations
Help keep our work organized by welcoming volunteers, coordinating projects, supporting donor communications, and managing administrative tasks.
Bring Your Ideas
Have a skill or an idea that does not fit one of these roles? We would love to hear from you.
Contact us and tell us what interests you, what experience you bring, and how you would like to get involved.
Share Our Story
Most people still do not realize how close these therapies may be—or how many families could still be locked out by cost. Sharing our mission helps us reach donors, advocates, and families before approval becomes a financial emergency instead of a medical breakthrough.