Get Involved
Your help makes a
world of difference.
The Dystonia Foundation™ is a small, focused nonprofit. Everything we've built and everything we're building exists because people showed up for it.
Become an ambassador
Nearly 300,000 people in North America are living with dystonia. Most of them waited years for a diagnosis. Many are still waiting, not because the condition is untreatable, but because the awareness simply isn't there yet.
Dystonia Foundation™ Ambassadors are changing that. They show up at community events, sit across from legislators, and meet newly diagnosed patients who feel like they're facing this alone. The most powerful thing you can put in front of a doctor, a lawmaker, or a frightened new patient isn't a statistic. It's a person. It's you.
Dystonia Foundation™ Ambassadors are changing that. They show up at community events, sit across from legislators, and meet newly diagnosed patients who feel like they're facing this alone. The most powerful thing you can put in front of a doctor, a lawmaker, or a frightened new patient isn't a statistic. It's a person. It's you.
Ambassadors are people living with dystonia, along with their caregivers and family members, who are ready to take their experience beyond their own four walls. You don't need a background in public speaking or policy. You need to be willing to show up and tell the truth about what it means to live with this condition. We'll take care of the rest.
As an Ambassador, you'll have the opportunity to advocate directly with policymakers, including efforts to achieve federal qualified disability status for dystonia, to engage with researchers and clinicians pushing for better treatment options, and support newly diagnosed patients who are exactly where you once were.
The program is actively being designed, which means early Ambassadors have direct input into how it grows. Here's what to expect after you apply:
This page is here to help. You’ll find practical tools, adaptive solutions, and everyday strategies designed to reduce strain, ease discomfort, and support independence. Some are small adjustments. Others may be new approaches you haven’t tried yet. The goal isn’t to change how you live — it’s to make daily life more manageable, on your terms.
As an Ambassador, you'll have the opportunity to advocate directly with policymakers, including efforts to achieve federal qualified disability status for dystonia, to engage with researchers and clinicians pushing for better treatment options, and support newly diagnosed patients who are exactly where you once were.
The program is actively being designed, which means early Ambassadors have direct input into how it grows. Here's what to expect after you apply:
This page is here to help. You’ll find practical tools, adaptive solutions, and everyday strategies designed to reduce strain, ease discomfort, and support independence. Some are small adjustments. Others may be new approaches you haven’t tried yet. The goal isn’t to change how you live — it’s to make daily life more manageable, on your terms.
- Apply: Fill out the interest form. It takes about five minutes.
- Connect: A member of our team will reach out within a week to schedule an introductory call.
- Get trained: You'll receive orientation, messaging guides, and program tools before engaging publicly.
- Get to work: We'll match you with opportunities that fit your interests, availability, and comfort level.
If you can, please make a donation
We're a nonprofit with a clear mission, a growing platform built over nearly a decade, and programs we're actively developing in California. Right now, donations are going directly toward getting our Just-in-Time first responder training off the ground, with short, accessible video-based programs designed to help emergency personnel quickly recognize dystonia symptoms and respond appropriately when it matters most. That training is in development. Your donation is part of what makes it possible.
Donate to Dystonia Foundation™Are you a healthcare organization? Partner with us
Our Just-in-Time training curriculum is ready to be piloted, and we're looking for the right healthcare systems and first responder units to do it with. The modules are short and video-based, built to fit into existing workflows rather than disrupt them. If your organization works with frontline professionals and you see an opportunity here, let's talk.
Start the ConversationThe easiest way to help: spread dystonia awareness
Our online resource hub was made for the person who just received a dystonia diagnosis and has no idea what comes next. The hub exists also for the family member who has spent months searching for answers on their behalf.
Most people find us because someone who cared enough sent them a link. It sounds small. It isn't. For someone in the middle of a diagnostic journey with nowhere to turn, landing on a resource that finally makes sense can change the entire trajectory of what comes next.
If you know someone who could use it, send them here. That's one of the most direct things you can do.
See Dystonia ResourcesMost people find us because someone who cared enough sent them a link. It sounds small. It isn't. For someone in the middle of a diagnostic journey with nowhere to turn, landing on a resource that finally makes sense can change the entire trajectory of what comes next.
If you know someone who could use it, send them here. That's one of the most direct things you can do.
Not sure where to start?
If you're a potential donor trying to understand where your money goes, a healthcare professional curious about our training program, or someone who just wants to stay informed, reach out. We'll figure out the best way to get you involved.
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