ABOUT US
Supporting everyone affected
by dystonia from diagnosis
to daily life
We're a nonprofit building the resources, training, and awareness that patients and families deserve.
Dystonia affects millions. Most people, including medical professionals, have never heard of it.
Without a name for what they're experiencing, patients spend years chasing the wrong diagnoses, cycling through specialists, treatments that don't work, and explanations that don't fit. In emergency situations, symptoms get misread.
In clinical settings, the condition gets overlooked. Sometimes that leads to delayed care. Sometimes the consequences are more serious than that.Dystonia isn't obscure because it's rare. It's obscure because awareness has never caught up with prevalence and that gap has real costs for real people every day.
In clinical settings, the condition gets overlooked. Sometimes that leads to delayed care. Sometimes the consequences are more serious than that.Dystonia isn't obscure because it's rare. It's obscure because awareness has never caught up with prevalence and that gap has real costs for real people every day.
We exist to close the gap between how common dystonia is and how little the world understands it
That means training first responders to recognize dystonia in the field, so that a misread symptom doesn't become a crisis. It means giving healthcare professionals the tools to identify it earlier, so patients aren't left waiting years for an answer. And it means making sure that anyone faced with a dystonia diagnosis, whether they're newly diagnosed or years into it, has somewhere to turn and a guiding light.We started in Southern California.
We're building toward a national footprint. Every program we develop is designed around one question: what actually changes outcomes?
Values that drive us:
Honesty
We don't overstate what we know or what we've achieved. Dystonia is complex. The road ahead is long. We'd rather lay it out plainly than try to soften it.
Urgency
Every year without a diagnosis is a year lost. Every misread symptom in an emergency is a risk that didn't need to exist. We move with that in mind.
Empathy
This work starts with listening to patients, families, and people on the frontlines. We don't design programs in a vacuum.
Tenacity
Changing how a condition is understood across an entire medical system takes time and effort. We're in it for the long game.
What we do:
First responder training
We're developing Just-in-Time (JIT) video training for emergency personnel: short, practical modules built for high-pressure situations. When someone with dystonia ends up in an emergency, the person responding should know what they're looking at. Right now, most don't.
We're developing Just-in-Time (JIT) video training for emergency personnel: short, practical modules built for high-pressure situations. When someone with dystonia ends up in an emergency, the person responding should know what they're looking at. Right now, most don't.
Healthcare educationUse movement as medicine
A dystonia diagnosis currently takes years for most people. We're working inside healthcare systems to shorten that timeline, developing tools that help clinicians identify the condition earlier and with more confidence.
A dystonia diagnosis currently takes years for most people. We're working inside healthcare systems to shorten that timeline, developing tools that help clinicians identify the condition earlier and with more confidence.
Patient & family resources Manage sensory overload
Our online dystonia resources exist for the person who just got a diagnosis and doesn't know where to start, and for the family member who's been searching for answers even longer. Thousands of people have found it. We're building out resources for patients further.
Our online dystonia resources exist for the person who just got a diagnosis and doesn't know where to start, and for the family member who's been searching for answers even longer. Thousands of people have found it. We're building out resources for patients further.
Public awarenessKeep medication close
From digital campaigns to art installations at Southern California music festivals, we work to put dystonia in front of people who've never encountered it because the more the public understands it, the safer the world becomes for people living with it.
From digital campaigns to art installations at Southern California music festivals, we work to put dystonia in front of people who've never encountered it because the more the public understands it, the safer the world becomes for people living with it.
Years of misdiagnoses. Treatments that failed. Then, finally, an answer and a mission.
Devin McClernan was thirteen when his symptoms began. What followed was years of misdiagnoses, treatments that didn't help, and a medical system that couldn't tell him what was wrong. At his lowest point, he lost his ability to speak entirely.
Deep-brain stimulation eventually gave him his independence back. The years spent in the dark without answers, without a clear path, without anyone who truly understood what he was going through didn't leave him. They became the foundation for everything that came next.
In 2015, Devin founded Down with Dystonia, now known as the Dystonia Foundation™, because he knew the experience he'd had wasn't unique. Thousands of people were living the same confusion, the same delay, the same isolation. Most of them had no idea others were going through it too.
Over the past decade, the Foundation has grown from a visibility platform into an organization with funded programs, a first responder training curriculum in development, and a resource hub that has already reached thousands.
Now the work scales. Every patient who's still waiting. Every professional who's never heard the word dystonia. Every community that deserves better… we're coming for all of it.
Meet the Team
Devin McClernan
Executive Director
Devin McClernan is a filmmaker, creative operator, and patient advocate focused on reshaping how dystonia is understood through storytelling and real-world impact. Drawing from his own experience with the condition, he leads initiatives that bridge awareness gaps and build scalable systems for education and support.
Aexander Valentine
Intrim Executive Director
Alexander Valentine is the Interim Executive Director of the Dystonia Foundation™, focused on closing the gap between how common dystonia is and how little it’s understood. With a background in communications and operations, he leads efforts to expand real-world education and build the systems needed to ensure patients, families, and first responders can recognize and respond with confidence.
Chris Hutton
Intrim Executive Director
Dr. Chris Hutton is a board-certified emergency physician and Vice Chief of Staff at Santa Ynez Valley Cottage Hospital, bringing both clinical leadership and a global perspective to patient care. Passionate about expanding access to care and advancing awareness of neurological conditions like dystonia, he combines frontline experience with a deep commitment to education and improved outcomes.
Kevin Hutton
Executive Director
Dr. Kevin Hutton is a retired emergency physician executive and pioneer in medical transport, known for advancing critical care systems and emergency response at scale. He brings deep operational expertise to the Foundation’s Just-in-Time education initiatives, helping equip first responders to recognize and respond to dystonia in real-world scenarios.
Gary McClernan
Intrim Executive Director
Gary McClernan is a seasoned finance executive with over 35 years of experience across Fortune 1000 companies and high-growth startups, with a background spanning IPOs, private equity, and corporate turnarounds. Drawing from both his professional expertise and personal health journey, he brings a grounded perspective to advancing awareness, education, and support for those navigating neurological conditions like dystonia.
Stephanie McClernan
Intrim Executive Director
Stephanie McClernan is a business leader and accounting professional who brings both operational expertise and personal passion to her role as a board member. Driven by her family’s experience with dystonia, she is a dedicated advocate for research, education, and helping others navigate the path to diagnosis and care.
This work takes a community. Here’s how you can help:
The Foundation is small by design: focused, not sprawling. The reach we're building toward requires people who believe in it.
Become an ambassador
Represent the Foundation in your community. Help us reach people who haven't heard of dystonia yet and the ones who have but don't know where to turn.
Donate
We're a nonprofit. Every dollar goes toward programs that are actively being built and piloted right now.
Share our resources
If you know someone dealing with a dystonia diagnosis, send them to our resource hub. That's often how people find us, and it matters more than it might seem.
Partner with us
Healthcare organizations, institutions, and brands: if there's an opportunity to build something together, we want to hear about it.
We want to hear from you
If you're a healthcare organization looking to bring our training to your team, a potential donor, or someone who wants to get involved, reach out. We'll point you in the right direction.
Contact Dystonia Foundation™