Each year, Dysphonia International collaborates with three other dystonia patient organizations through the Dystonia Advocacy Network (DAN) to raise awareness on Capitol Hill and advocate for research and public policies that support people living with all forms of dystonia. The DAN represents the broader dystonia community and includes the Benign Essential Blepharospasm Research Foundation (BEBRF), Dysphonia International (DI), the Dystonia Medical Research Foundation (DMRF), and the National Spasmodic Torticollis Association (NSTA).
The 2026 Advocacy Day will take place on March 12, 2026, in Washington, D.C., and offers an important opportunity to engage directly with members of Congress and their staff. Participants share their experiences, help raise awareness, and reinforce the importance of continued federal funding for dystonia research, including spasmodic dysphonia, as well as policies that impact access to care. Advocates are typically placed in small teams, often alongside others from their region, and meetings are brief but impactful.
To help volunteers feel prepared and confident, a virtual orientation webinar will be held on Tuesday, March 3, 2026, at 5:00 pm ET. Information will be provided in advance so participants can review key topics, and a recording will be shared for those unable to attend live.
On the morning of Advocacy Day, participants will gather at approximately 8:00–8:30 AM ET to meet their teams, review their schedules, and go over final details before heading to Capitol Hill, which is a short walk or cab ride away. Please note that participants are responsible for arranging and covering their own travel and hotel accommodations, as travel scholarships are not available.
If you are interested in participating, please complete the registration form by Monday, March 2, 2026:
https://dystoniafoundation.formstack.com/forms/advocacy_days_registration
This is a meaningful opportunity to share your story and help ensure our community’s voice is heard. For additional information, please contact voice@dysphonia.org.
The Dystonia Advocacy Network (DAN) is a grassroots organization that brings dystonia-affected individuals together to speak out with a single, powerful voice on legislative and public policy issues which impact the dystonia community. The DAN welcomes and represents individuals with all forms of dystonia, and is led by the following dystonia organizations:
- Benign Essential Blepharospasm Research Foundation (BEBRF)
- Dysphonia International (DI)
- Dystonia Medical Research Foundation (DMRF)
- National Spasmodic Torticollis Association (NSTA)
Dystonia advocates develop relationships with their legislative leaders to help them understand the challenges of those living with dystonia. The DAN continuously works to adopt and advance a legislative agenda which raises awareness of dystonia, educates policymakers about dystonia, addresses patient care issues, and moves research forward.
We are grateful to the Dystonia Medical Research Foundation who provides staff support to the Dystonia Advocacy Network, a team of dystonia organizations working together to give the dystonia community a voice in Washington, DC. You can become an empowered dystonia advocate – the community needs your voice!