Sharing our lived experiences can be very powerful. Offer support to others in the dystonia community by holding space for their story.
@dystoniafoundation.bsky.social
@dystoniafoundation.bsky.socialSharing our lived experiences can be very powerful. Offer support to others in the dystonia community by holding space for their story.
@dystoniafoundation.bsky.socialLiving with dystonia presents daily challenges. Don’t be afraid to take some time out to take care of yourself.
@dystoniafoundation.bsky.socialVisit the new online calendar on the DMRF website, with listings of support group meetings and featured events such as Dystonia Zoo Days and webinars.
@dystoniafoundation.bsky.socialDid you know that you don't have to live in a particular geographic area to join a virtual support group? If you see a meeting on the website calendar that you'd like to attend, reach out to the group leaders for more details.
@dystoniafoundation.bsky.socialOct. 10 is #WorldMentalHealthDay. The theme is "Lived experiences heard: real voices, real change." Members of the dystonia community have a lived experience of a rare neurological disorder. Resources related to dystonia are on the DMRF website:
@dystoniafoundation.bsky.socialJoin us at the Connecticut Dystonia Zoo Day on Nov. 1. Zoo Day is a meaningful way to come together and remind each other that no one has to face dystonia alone.
Register by the Oct. 14 t-shirt deadline:
https://bit.ly/3qDcN1W
@dystoniafoundation.bsky.socialStay 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 October e-news is now available: https://conta.cc/4dJATNy
@dystoniafoundation.bsky.socialThank you to everyone who participated in the Boston 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:
https://bit.ly/4y3s6NP
@dystoniafoundation.bsky.socialThank you to everyone who participated in the Rochester Dystonia Zoo Day. The Dystonia Medical Research Foundation is especially grateful for the support of our volunteers and sponsors. Photos from the event are available here: https://bit.ly/4y3s6NP
@dystoniafoundation.bsky.socialVisit the Resource Library on the new DMRF website, with informative content searchable by topic, type of dystonia, articles, brochures/fact sheets, videos and webinars.
@wheelieoutthere.bsky.socialWednesdays at 1-2 PM ET – #Dance for Life is a program for people living with movement and neuromuscular conditions like #MultipleSclerosis, #Parkinson’s, #dystonia and others.
Led by experienced instructors from Univ. of Florida Health Shands Hospital Arts in Medicine. 1/2
@dystoniafoundation.bsky.socialDystonia 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.
@dystoniafoundation.bsky.socialThe 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.
@dystoniafoundation.bsky.socialRochester'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.
https://bit.ly/47ENgbv
#dystonia #dmrf #dystoniafoundation
@dystoniafoundation.bsky.socialThere 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.
@intlneuromod.bsky.social#FBF2024: Deep Brain Stimulation for GNAO1-Associated Dystonia: A Systematic Review and Meta-Analysis
👀 https://www.neuromodulationjournal.org/article/S1094-7159(23)00938-8/fulltext
#Neuromodulation #DeepBrainStimulation #Dystonia #MovementDisorders #Neurosurgery
@dystoniafoundation.bsky.socialBoston 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.
@dystoniafoundation.bsky.socialIt’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.
@dystoniafoundation.bsky.socialRapid-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.
@dystoniafoundation.bsky.socialAs 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.
