Research

The Dystonia Medical Research Foundation (DMRF) has supported and stimulated dystonia research for 40+ years.

DMRF-funded research has led to a better overall understanding of dystonia as well as breakthroughs in genetics and therapeutics. The funding investigators obtain from the DMRF often serves as seed money that ultimately positions them to earn more robust funding from agencies such as the National Institutes of Health and Department of Defense.

Virtual Walk – Snoopy

 The year of 2019 was one of my hardest living with Myoclonus Dystonia. It was challenging and frustrating. There were moments that I lost my courage and my belief in myself. What emerged were four lessons that were invaluable. First lesson: trust your gut, and your own advocacy. When at a loss, call up the […]

understandingfactsheet300

Understanding Dystonia Fact Sheet

This FREE fact sheet from the Dystonia Medical Research Foundation clearly illustrates various forms of dystonia. This fact sheet is also available as a free download. Click Here to Download.

Please limit your order to fewer than 10 of this item. If you need more than 10 for an upcoming event, contact the DMRF at 800-377-3978. Shipping charges may be applied to large orders.

cici 600w

Virtual Walk – Roxie

I have dystonia. I was diagnosed 2 years ago. It is not easy to have dystonia. It has been hard to find treatments that work. I hope research helps find more treatments and helps people understand dystonia. Donation Goal Donors Please Contribute:

Never_Look_Down_dystonia_children_reduced_for_web

Never Look Down – Children’s Book

It takes a pretty special kid to view being diagnosed with a neurological disorder as an opportunity to contribute something positive to the world. But that’s how Zachary Weinstein responded to developing dystonia.

Zachary and his mother Alyssa Dver wrote a book entitled Never Look Down in partnership with the Dystonia Medical Research Foundation (DMRF) so that other children like Zachary feel empowered, not diminished, by this illness. The title is taken from Zachary’s personal motto for overcoming obstacles.

Never Look Down provides newly diagnosed children and their families a simple way to understand dystonia – what the symptoms may be and how it can affect everyday life.  The book also provides a variety of resources that can help people with dystonia, their friends, and family members to be better informed and cope with this chronic disorder.

There are several forms of dystonia that typically begin in childhood, including primary and secondary forms.  If a child in your family is impacted by dystonia, you may be eligible to receive a copy of Never Look Down at no charge. Please contact the DMRF at 312-755-0198 or dystonia@dystonia-foundation.org.

Virtual Walk – Coolidge & McKinley

Coolidge and McKinley are proud to participate in the DMRF’s Virtual Walk – it is important to note they really like ‘real’ walks. These handsome guys are labs – and support all work to advance the understanding of dystonia in the laboratories around the world! Coolidge and McKinley are the energetic, furry family members of […]

Find Support

Many people have never heard the word “dystonia” until their own diagnosis.
The DMRF partners with volunteers to sponsor local support groups and online support forums.
Support groups provide local opportunities for information, camaraderie, and community activism.
Online groups are available 24/7 and connect you to others in the community regardless of geography.

doctor giving neck injection

Botulinum Neurotoxin Therapy Survey

We need your valuable input. Please consider participating in a brief, anonymous survey to help the Dystonia Medical Research Foundation better understand your experiences with botulinum neurotoxin injections. Individuals who are diagnosed with dystonia and receive treatment in the USA are welcome to participate. Click here to participate.  Any questions, please contact us.    

redlight

Red Light Green Light

Dystonia is a complex disorder, but the fact sheet uses the red light/green light game as an analogy to explain dystonia in a way children can understand: Your brain is the traffic light that tells your muscles when and how to move. Dystonia makes it hard for the brain to give muscles the right signals at the right time.  Download a copy or order one for free below.