Promote Awareness
Ask Me About Dystonia
September is Dystonia Awareness Month, but promoting dystonia awareness is critical all year round. You can promote dystonia awareness by encouraging others to “Ask Me About Dystonia,” the DMRF’s campaign to initiate conversations about this rare neurological disorder. We encourage you to work together to promote dystonia awareness locally and through social media.
We encourage you to like and share DMRF social media posts related to the Ask Me About Dystonia campaign. If you have questions about dystonia, the DMRF has answers.
Tips & Hints for Awareness Actions
Sign Up for Dystonia Zoo Days
The DMRF is holding in-person Dystonia Zoo Day events in select cities to re-unite the dystonia community, promote awareness, and support the mission to find a cure.
Share DMRF Posts on Social Media
Follow DMRF on social media and share news and facts about dystonia.
Find us on >>>
Download the Ask Me About Dystonia graphic for your social media posts here.
Join DMRF Email List
Sign up to receive monthly email updates and other news on DMRF activities.
DMRF does not sell or share contact information with third parties.
Pass Along Your Dystonia Dialogue
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.
Start A Facebook Fundraiser
You can collect donations for DMRF through Facebook’s fundraiser tools.
- Send an invitation or private message to Dystonia Medical Research Foundation.
- Go to Facebook to get started.
- Be sure to notify DMRF of your fundraiser.
Use Donate Sticker on Instagram
Instagram 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
Watch & Share Video from DMRF YouTube Channel
Check out DMRF’s YouTube channel
Presentations with experts on dystonia-related topics, interviews with dystonia researchers, and more.
Order Info Cards
Keep wallet-sized information cards and stickers on hand to promote dystonia awareness among the people you see throughout the day.
Give an Info Card to a Family Member
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.
Give an Info Card to a Stranger
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.
Join the Global Dystonia Industry
The 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.
Register for Global Dystonia Registry
Wildcard – Do Something Creative for Awareness
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.
Find a Doctor
Finding a doctor with special training in movement disorders can make a big difference in your treatment.
The DMRF maintains a directory of physicians and healthcare providers with experience and/or interest in treating people with dystonia.
