Raise Awareness and Make a Difference
During the month of September, the DMRF is enlisting volunteers to raise awareness for dystonia.
An estimated 250,000 people in the United States have dystonia, a chronic movement disorder affecting the brain and nervous system. It is the third most common movement disorder after essential tremor and Parkinson disease. Dystonia causes excessive, uncontrollable muscle spasms. The muscle spasms twist the body and limbs into involuntary movements and awkward postures. Estimates suggest that 70% of patients are misdiagnosed prior to a dystonia diagnosis.
Shine a Light on Dystonia
The Dystonia Medical Research Foundation is kicking off “Shine a Light on Dystonia” this September by requesting that buildings and landmarks illuminate their structures in blue during the month. Blue is the recognized color for dystonia awareness.
During the upcoming weeks, we will update the list of all the locations participating in Shine a Light on Dystonia. Please inform us if you arrange for a local landmark to light up blue, so we can include them in the list. Your support and participation will help spread awareness.
Ideas to Shine a Light on Dystonia:
- Ask the buildings in your area to turn their lights blue for a day, week or the entire month of September.
- Post to social media with the hashtags #DystoniaAwareness #DMRF and tag the building.
- Distribute DMRF information sheets to people passing by to explain the significance of the blue lights.
- Reach out to local news stations for coverage and share your dystonia story.
September 1 @ 10:15 PM
Location: Niagara Falls
Details: Witness the Falls turning blue for dystonia through the live cam link:
Niagara Falls Live Cam
September 1 & 2
Location: Willis Tower, Chicago
September 1 – 7
Location: Various locations in Chicago
Location: Peace Bridge, Buffalo & Fort Erie
Details: Buffalo & Fort Erie Public Bridge Authority
Location: CN Tower, Toronto, Canada
Location: Spires at Market Square, Rapid City, South Dakota
Location: I-35W St. Anthony Falls Bridge
Mississippi River Crossing in Downtown Minneapolis
September 5 – 8
Location: Baltimore City Hall Dome
Location: City Hall, Warren, Michigan
Location: Massachusetts Bridges – MassDOT
Bridges lit up:
-Fore River Bridge
Location: San Diego Convention Center
Location: Arkansas State University Library
Location: National Bank in Jonesboro, AK
Location: University of Buffalo’s Jacobs School of Medicine and Biomedical Sciences
Location: City Hall Houston, TX
Location: Lowry Avenue Bridge in Minneapolis, MN
Share your story
Whether you’ve experienced dystonia or know someone who has, sharing your personal journey on social media can make a powerful impact. In your daily interactions, consider all the opportunities to share your dystonia story, aiming to educate and raise awareness.
Wear blue for dystonia
Pick a day in September (or pick one day every week) and encourage friends, family and co-workers to participate in the “Wear Blue for Dystonia” campaign. Share pictures on social media using hashtags (#DystoniaAwareness #DystoniaAwarenessMonth #DMRF) to increase visibility and engagement.
Visit the DMRF to get free stickers to wear or share to spark conversations. Click here to get your stickers.
Spread knowledge about dystonia by sharing informative resources, facts, and articles on social media. Help dispel misconceptions and promote accurate understanding of the disorder. The DMRF provides free educational publications, newsletters, fact sheets, and brochures. Email us at [email protected] to order materials.
Connect with support groups
Engage with local dystonia support groups to foster a sense of community. Attend meetings, share experiences, and provide support to individuals and families affected by dystonia. Click here for more about joining a group in your area or online.
Advocate for dystonia
Contact the DMRF to receive information on advocacy issues and then reach out to local representatives, healthcare providers, and policymakers to raise awareness about dystonia and advocate for increased funding, improved access to treatment, and better support systems for those with dystonia.