Dystonia Strong

Dystonia is a Movement Disorder

Dystonia Strong logo

September is Dystonia Awareness Month, but promoting dystonia awareness is critical all year round. You can promote dystonia awareness by joining Dystonia Strong, the DMRF’s campaign to celebrate the strength and resilience of individuals with dystonia and their families. Dystonia Strong empowers the community to work together to promote dystonia awareness locally and in social media.

The check list below contains several ways to promote dystonia awareness. How many can you complete? Two or three? The whole list?

We make it easy – Scroll for help and instructions to complete each task.

Print and check the list by hand OR take a screenshot and use an image editor to keep track of your accomplishments.

Tips & Hints for Awareness Actions

Check out the line of Dystonia Strong items: baseball-style shirt, yard flag, banner, magnet, and more! 

Selfies are fun but can also promote awareness. Consider posting a pic that demonstrates an aspect of life with dystonia: challenges, successes, life hacks, coping tips, medical appointments, etc. 

  • Use the hashtag #dystoniastrong

Post a short vide on social media about what Dystonia Strong means to you.

  • Use the hashtag #dystoniastrong

The DMRF is pleased to begin returning to in-person events in select cities to re-unite the dystonia community, promote awareness, and support the mission to find a cure. This year’s Dystonia Zoo Day season includes both in-person events and virtual opportunities to participate regardless of geography. 

Follow DMRF on social media and share news and facts about dystonia.

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DMRF does not sell or share contact information with third parties.

If you are a Dystonia Dialogue subscriber, share your copy with a friend, family member, or your doctor’s office when you are finished reading it. Sharing the magazine helps spread the word and maximizes its use before being recycled or discarded.

You can collect donations for DMRF through Facebook’s fundraiser tools.

Help find a cureInstagram users can raise funds for the DMRF using a “donation sticker” embedded in their stories feature.

Be sure to notify DMRF of your fundraiser by tagging @dystoniamrf

Check out DMRF’s YouTube channel 

  • Presentations with experts on dystonia-related topics, interviews with dystonia researchers, and more.

Keep wallet-sized information cards and stickers on hand to promote dystonia awareness among the people you see throughout the day.

Wallet-sized DMRF information cards are a convenient and easy way to spread the word about dystonia. Keep a small stack on hand and give out to family, friends, strangers, and others as needed.

Wallet-sized DMRF information cards are a convenient and easy way to spread the word about dystonia. Keep a small stack on hand and give out to family, friends, strangers, and others as needed.

Global Dystonia Registry LogoThe Global Dystonia Registry complements the work of the Dystonia Coalition, a clinical research effort supported by the National Institutes of Health.

The goal of the Global Dystonia Registry is to support future dystonia studies, including clinical and research trials. Although the focal dystonia’s have many different manifestations, most experts believe they share a common pathogenesis or mechanism that causes the disorder. The common causes may be a similar gene defect, similar lifetime experiences, or both. Collecting information from different patient populations may help us identify the common features that they may share.

There are countless creative ways to promote dystonia awareness. Feel free to participate in an activity not suggested on the bingo card. Use your skills and imagination to promote awareness among family, friends, neighbors, and the public.

Ideas might include hosting a virtual dystonia awareness meeting with family and friends to share what you know, promoting awareness through art or music, educating local first responders about dystonia signs and symptoms, reaching out to local government officials to explain what dystonia is, or any number of options.