FREQUENTLY ASKED QUESTIONS
What is Dystonia You Day?
Dystonia You Day is part of a national campaign that promotes awareness of dystonia, connects the dystonia community, and supports the work of the DMRF. The campaign includes virtual components that reach people in all 50 states. By bringing together medical experts, public servants, and members of the dystonia community to share their stories and raise awareness in a family-friendly, fun environment, Dystonia You Day provides individuals and families affected by dystonia, their friends and colleagues, and medical professionals, the chance to connect.
What is Dystonia?
Dystonia is a rare brain disorder that causes extreme muscle spasms so intense they produce involuntary movements and postures of the body and limbs. Gait, balance, speech, and vision may be impaired due to the twisting, painful contortions. Put quite simply, people with dystonia cannot control the movement of their own bodies. The disorder affects people of all ages and backgrounds. Because it is often misdiagnosed, patients can spend years without proper treatment. You can help the DMRF change this.
How will the virtual event work?
This is an event that will take place online rather than in a physical location.
Who can participate?
Everyone is welcome to participate on the day of the Dystonia Virtual You Day. Registration is FREE.
How do I set up a team?
Teams can start with one person. When you sign up, select 'The New Team' option from the Select Your Team field. You will receive an email with a link to your team page and you can invite friends and family to make donations and sign up to join you in raising awareness on September 30.
Where do I go to participate on the day of the Dystonia Virtual You Day?
Just visit us at www.dystonia-foundation.org/letszoothis. The event will be on this website on September 30, 2025. Time TBA.
I want to mail in a donation. What do I need to do?
If you would like to donate by check, please make the check out to DMRF with a check memo to include Virtual Dystonia You Day and mail to Attention: Virtual You Day, Dystonia Medical Research Foundation, One East Wacker Drive, Suite 1730, Chicago, IL 60601-1980
Is my donation to the Dystonia You Day tax-deductible?
Yes, Dystonia Medical Research Foundation is registered as a not-for-profit, 501(c) (3) organization under the Internal Revenue Code, therefore all donations are tax-deductible as allowable by law. The DMRF’s Tax ID Number is 95-3378526.
Who should I contact with questions about Virtual You Day?
Please contact the DMRF at events@dystonia-foundation.org or 312-755-0198.