Promote Dystonia Awareness

Dystonia Moves Me Bingo Challenge

September is Dystonia Awareness Month! You can promote dystonia awareness by joining Dystonia Moves Me, the DMRF’s annual awareness campaign. Dystonia Moves Me empowers volunteers to promote dystonia awareness locally and in social media.

This year, you're invited to take the "Dystonia Moves Me Bingo Challenge." The bingo card below contains 16 ways to promote dystonia awareness. How many can you complete before September 30?

Complete a row and—bingo!—you earn a single entry into a random drawing for a $100 gift card. Rows may be vertical, horizontal, or diagonal. Complete the whole card to earn 10 entries into the drawing!

We make it easy - Scroll toward the bottom of the page for instructions to complete each task.

To mark off your completed tasks:

Print and cross out your completed squares by hand OR take a screenshot with your device and mark completed squares with an image editor.

To submit your card and enter the contest:

Submit your card in an email to awareness@dystonia-foundation.org OR upload at https://dystonia-foundation.org/bingo-upload

Deadline to submit your bingo card is October 5, 2020.

DRAFT Bingo Card color

Tips & Hints for Completing Bingo Items:

Join us for nationwide Virtual Dystonia Zoo Day on Saturday, September 12, 2020 to unite DMRF supporters across the country and their friends and families, raise awareness of dystonia, and raise funds to support the DMRF. This is an online event. Tune-in for streamed activities throughout the day, beginning at 11am Central Time (USA). The program will include a live zookeeper chat, Q&A with movement disorder experts, children’s activities, and much more.

It’s free to sign up and you can support the event by purchasing an event t-shirt, making a donation, and/or becoming a “ZooGooder” sponsor. All donations will be 100% matched by a generous anonymous donor!

Click here for more information.

The Dystonia Dialogue is the DMRF's newsletter, printed three times a year. Did you receive your copy?

You can find the latest issue online. Features include details about the Virtual Dystonia Zoo Day on September 12, an interview with movement disorder specialist and past DMRF Clinical Fellow Dr. Harini Sarva, new research grant announcements, stories from the dystonia community about coping during the Covid-19 pandemic, resources for self-care, and more.

A Dystonia Dialogue subscription is just one perk of DMRF membership.

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

Find us on Facebook , Instagram (@dystoniamrf) and Twitter (@dmrf).

Sign up to receive monthly email updates and other news on DMRF activities.

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

dystonia legislative advocacyThe Dystonia Advocacy Network (DAN) provides tips on reaching out to your US Senators and Representatives to share your story and advocate for dystonia.

Sign up for action alerts to be notified when the dystonia community needs to contact Congress on specific legislation or policy.

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.

Go to www.facebook.com/fundraisers to get started.

Be sure to notify DMRF of your fundraiser. Send an invitation or private message to Dystonia Medical Research Foundation .

Instagram users can raise funds for the DMRF using a "donation sticker" embedded in their stories feature.

Click here for more information and instructions.

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

The DMRF website has a wealth of information on what dystonia is, types of dystonia, treatments, research, and more. Find a page you find interesting and share on Facebook, Twitter, or other social media.

Check out DMRF's YouTube channel for 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.

Click here to order

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.

Click here to order.

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 #dystoniamovesme

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.

Click here to order.

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.

Click here to register.

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.

Dystonia Community

How You Can Help
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