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Dystonia Medical Research Foundation

@dystoniafoundation.bsky.social
78 followers 15 following 363 posts

Dystonia is a neurological movement disorder that causes excessive, involuntary muscle contractions. The Dystonia Medical Research Foundation (DMRF) is a 501(c)3 non-profit organization dedicated to serving all people with dystonia and their families.

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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 05/10/2026
Dystonia Awareness Month may be over, but you can keep the spirit of Virtual YOU Day alive throughout the year by building community and offering support to others who have been impacted by dystonia. #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 04/10/2026
The Boston Dystonia Zoo Day is today, Oct. 4, at the Franklin Park Zoo in Boston. Check in/registration starts at 9 am; program begins at 10 am. A special thank you to all our sponsors for supporting the work of the DMRF. bit.ly/48slhd0 #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 03/10/2026
Rochester's Dystonia Zoo Day is today, Oct. 3, at the Seneca Park-Longhouse Shelter followed by the Seneca Park Zoo. Check in starts at 11 am; program begins at 12 pm. A special thanks to our sponsors for supporting the work of the DMRF. bit.ly/47ENgbv #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 02/10/2026
There are many different types of dystonia. It can appear as a symptom in a wide range of other diseases and conditions. As part of our Ask Me About Dystonia campaign we encourage you to Like and Share quick facts to show the complexity of dystonia. #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 02/10/2026
Boston Dystonia Zoo Day is Sun 10/4 and it’s not too late to register and join us at the Franklin Park Zoo. Meet people who understand dystonia and build lasting friendships. Check-in begins at 9 am, with the program starting at 10 am. bit.ly/48slhd0 #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 01/10/2026
It’s not too late to join us on Oct 3 for Dystonia Zoo Day at the Seneca Park Zoo in Rochester. Zoo Day is a chance to meet others who understand dystonia and share experiences. Check-in is 11 am, and the program starts at 12 pm. bit.ly/47ENgbv #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 30/09/2026
Rapid-Onset Dystonia-Parkinsonism (RDP) is a rare genetic disorder and an example of dystonia. During Sept. we’re sharing facts like this to help support those affected. Like and share to help spread awareness and encourage everyone to Ask Me About Dystonia. #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 30/09/2026
As the DMRF recognizes Dystonia Awareness Month, our website has officially been relaunched. It's easier to find a doctor, support group options, community events and other information about dystonia diagnosis and treatment. bit.ly/3QomM5G #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 30/09/2026
One day. One community. Countless opportunities to learn and connect. You can still register for DMRF’s Virtual YOU Day on Sept. 30 at 6 pm CT | 7 pm ET and discover resources that support your emotional well-being. Register free NOW: bit.ly/3RNQqEx #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 29/09/2026
Did you know paroxysmal dystonia causes sudden, brief episodes of involuntary movements and that it can be triggered by factors such as movement, exercise or stress? The DMRF asks you to start a conversation about dystonia. Like and share to help spread awareness. #dystonia #dmrf
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 28/09/2026
Did You Know? Dystonia can sometimes develop after an injury to the body or nervous system. Symptoms may appear weeks or even months later and often involve abnormal movements or postures. Like and Share to help spread awareness and support those with dystonia. #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 28/09/2026
Join DMRF’s Virtual YOU Day on Sept 30! Spend the day learning from experts, connecting with others and investing in your well-being. Reserve your spot on Sept. 30 at 6 pm CT | 7 pm ET: bit.ly/3RNQqEx #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 27/09/2026
Did you know musician’s dystonia is a task-specific form of dystonia that affects some people while playing an instrument? For Dystonia Awareness Month, start a conversation through this year's theme Ask Me About Dystonia. Like and share to raise awareness. #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 25/09/2026
Thank you to everyone who participated in the Michigan Dystonia Zoo Day this weekend. The Dystonia Medical Research Foundation is especially grateful for the support of our volunteers and sponsors. Photos from the event are available here: bit.ly/4wjNkXQ #dystonia #dmrf
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 25/09/2026
Thank you to everyone who participated in the Indianapolis Dystonia Zoo Day this weekend. The Dystonia Medical Research Foundation is especially grateful for the support of our volunteers and sponsors. Photos from the event are here: bit.ly/4wjNkXQ #dystonia #dmrf
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 25/09/2026
Did you know lower limb dystonia affects the leg, foot, and toes, causing involuntary muscle contractions and abnormal postures? For Dystonia Awareness Month, we encourage everyone to learn more and start conversations through this year's theme Ask Me About Dystonia. #dystonia #dmrf
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 24/09/2026
Did you know spasmodic dysphonia (laryngeal dystonia) affects the muscles that control the voice? During Dystonia Awareness Month, encourage others to Ask Me About Dystonia. Like and share to raise awareness and amplify the voices of people living with dystonia. #dystonia #dmrf
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 23/09/2026
Did you know dystonia can occur as a symptom of other neurological, genetic, and metabolic disorders? For Dystonia Awareness Month, start a conversation through this year's theme Ask Me About Dystonia. Like and share to help spread awareness. #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 23/09/2026
Join the DMRF on Sept. 30 at 6 pm CT | 7 pm ET for DMRF’s Virtual YOU Day, exploring practical tools for managing stress, building resilience, and prioritizing your well-being while living with dystonia. Registration is free! Learn more and sign up at bit.ly/3RNQqEx #dystonia #dmrf
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 22/09/2026
Thank you to everyone who participated in the Long Island Dystonia Zoo Day on Sept. 12. The Dystonia Medical Research Foundation is grateful for the support of our volunteers and sponsors. Photos from the event are available here: bit.ly/46VEq7X #dystonia #dmrf
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 22/09/2026
Thank you to everyone who participated in the Pittsburgh Dystonia Zoo Day on Sept. 13. The Dystonia Medical Research Foundation is grateful for the support of our volunteers and sponsors. Photos from the event are available here: bit.ly/46VEq7X #dystonia #dmrf
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 17/09/2026
Keep the Dystonia Awareness Month momentum going by supporting Patrick Anderberg’s 100K Grindstone Trail run on Sept. 19. Learn more at bit.ly/46Rhc2v #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 17/09/2026
Myoclonus-Dystonia is a rare dystonia that has rapid, brief muscle jerks with sustained muscle contractions causing twisting and abnormal postures. Learning about dystonia builds understanding of this often-misunderstood disorder. Sept. is Dystonia Awareness Month. #dystonia #dmrf
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 16/09/2026
Michigan Dystonia Zoo Day is Sat. Sept. 19. It’s not too late to register and join us at Potter Park Zoo in Lansing. Come and meet people who truly understand life with dystonia. Check-in and registration begin at 10 am, program starts at 11 am. bit.ly/4vLfFF6 #dystonia #dmrf
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 16/09/2026
Did you know hand dystonia can make everyday tasks like writing, typing or using utensils difficult? There are ways to help manage symptoms, including therapy, medications, botulinum toxin injections and adaptive strategies. #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 15/09/2026
Indianapolis Dystonia Zoo Day is Sept. 19! But it’s not too late to register and join us: bit.ly/3zyZgfN Zoo Day is a chance to meet people who understand dystonia. We'd love to see you! Check-in and registration begin at 10 am, the program starts at 11 am. #dystonia #dmrf
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 15/09/2026
💡Did You Know? Functional dystonia involves involuntary movements or abnormal postures caused by changes in how the nervous system functions, rather than damage to the brain or nerves. Help raise awareness about dystonia this month by Liking and Sharing this post. #dystonia #dmrf
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 14/09/2026
No one should face dystonia alone. The DMRF’s Virtual YOU Day on Sept. 30 at 6 pm CT | 7 pm ET, brings together people for an evening of education, encouragement, and connection—all from the comfort of home. Learn more and register today: bit.ly/3RNQqEx #dmrf #dystonia
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 13/09/2026
Thank You to all of our sponsors who have made Pittsburgh Dystonia Zoo Day a Success! #dystonia #dmrf
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 13/09/2026
Truncal dystonia affects the muscles of the torso. It can cause twisting, arching or abnormal postures of the trunk, which may make sitting, standing or walking difficult. There are treatments and strategies that can help. September is Dystonia Awareness Month. #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 12/09/2026
Thank you to all of our sponsors who helped make Long Island's Dystonia Zoo Day a success! #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 12/09/2026
Cervical dystonia affects the neck muscles, causing involuntary head movements, abnormal postures and neck/shoulder pain. But there are treatment options that can help manage symptoms. September is Dystonia Awareness Month, so please Like and Share this post. #dystonia #dmrf
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 12/09/2026
Join us in Rochester, NY on Oct. 3 for Rochester's Dystonia Zoo Day. Be sure to register by the Sept. 16 t-shirt deadline so you can proudly show others that you are a member of DMRF Zoo Crew! Register today at bit.ly/47ENgbv #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 12/09/2026
Tim Insogna is bringing people together to shine a light on dystonia and support the DMRF. This event is an opportunity to raise awareness of this often-misunderstood disorder, connect with others affected by dystonia, and help fuel research toward better treatments and a cure.
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 11/09/2026
You deserve a day that's all about YOU. On Wed, Sept. 30 at 6p CT | 7p ET, take time to recharge, learn and connect with others who understand life with dystonia at DMRF’s Virtual YOU Day. Learn more and reserve your free spot today: bit.ly/3RNQqEx #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 11/09/2026
Join us for Boston Dystonia Zoo Day on Oct. 4. Zoo Day is a way to come together and remind each other that no one has to face dystonia alone. Register by the Sept. 16 t-shirt deadline to be a member of DMRF Zoo Crew! Register today: bit.ly/48slhd0 #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 10/09/2026
Stay in the know about what is happening with research, advocacy, education and other resources in the #dystonia community with the DMRF monthly e-newsletter. The September e-news is now available: conta.cc/4xxsBjT #dmrf
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 10/09/2026
Oromandibular dystonia causes involuntary muscle contractions in the jaw, tongue and lower face which affects speaking, chewing and swallowing. Learn more about dystonia and help raise awareness during our Ask Me About Dystonia campaign in Sept. #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 10/09/2026
Pittsburgh Dystonia Zoo Day is almost here! Join us at the Pittsburgh Zoo on Sept. 13 for a day of connection, encouragement, and community. Check-in and registration begin at 9 am, with the program starting at 10 am. bit.ly/4czOkNK #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 09/09/2026
Long Island Dystonia Zoo Day is almost here! Join us at Suffolk County Farm on Sept. 12 for a day of connection, encouragement, and community. Check-in and registration begin at 9:30 am, with the program starting at 10:30 am. bit.ly/3qEojKj #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 08/09/2026
Sept. is Dystonia Awareness Month so honor someone who inspired you with a 50th Anniversary Tribute. Celebrate someone special while creating hope for the next generation of families affected by dystonia. It’s gratitude in action. Learn more: bit.ly/4jFiy65 #dystonia #dmrf
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 08/09/2026
Did You Know? Dopa-responsive dystonia (DRD), aka Segawa’s disease or DYT5 dystonia, often responds well to levodopa, a synthetic dopamine. Help us increase awareness and understanding of dystonia this September by Liking and Sharing this post. #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 07/09/2026
Join the DMRF on Sept. 9 for a webinar about deep brain stimulation (DBS) for dystonia. Speakers: 🔹Neepa Patel, MD, Rush University, Chicago 🔹Liz Rawson, DMRF Board member and DBS patient Wed. Sept. 9 6:00p CT | 7:00p ET Register today: bit.ly/4vZROBK #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 05/09/2026
Connecticut's Dystonia Zoo Day will take place in Hanson Cabin at the Beardsley Zoo in Bridgeport on Nov. 1! This is a chance to connect, share and build community. Enjoy a fun day at the zoo with people who understand. Register today: bit.ly/3qDcN1W #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 04/09/2026
The DMRF invites you to a special webinar focused on deep brain stimulation (DBS). Hear directly from a neurologist as well as a personal perspective from a dystonia patient about DBS surgery. Wed, Sept. 9 6:00p CT | 7:00p ET Register: bit.ly/4vZROBK #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 04/09/2026
Join the DMRF for Virtual YOU Day on Wednesday, Sept. 30 at 6 pm CT | 7 pm ET, a free online event featuring expert speakers, self-care strategies, mental health discussions, and meaningful community connection. Register today: bit.ly/3RNQqEx #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 03/09/2026
David Standaert, MD, PhD, has been appointed as VP for Research at the University of Alabama at Birmingham (UAB). He is a valued member of the dystonia community who has worked with the DMRF in many capacities. Congratulations! Read more: bit.ly/46l96zb #dystonia
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 03/09/2026
Blepharospasm is a type of focal dystonia that causes involuntary contractions of the eyelid and brow muscles. Help spread awareness of dystonia this September by liking and sharing this post and invite your social network to Ask Me About Dystonia. #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 02/09/2026
Some forms of dystonia are acquired, resulting from identifiable non-genetic causes such as medications, stroke or brain injuries. Acquired dystonias can occur alongside other neurologic symptoms. Raise awareness by encouraging others to Ask Me About Dystonia. #dystonia #dmrf #dystoniafoundation
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Dystonia Medical Research Foundation @dystoniafoundation.bsky.social · 02/09/2026
Generalized dystonia affects multiple parts of the body. While it can be life-changing, there are treatments to help manage symptoms and improve quality of life. Spread awareness during our Ask Me About Dystonia during Dystonia Awareness Month #dystonia #dmrf
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