Dystonia Medical Research Foundation

Join the DMRF webinar about the work of the Dystonia Coalition. Hear from the leaders: • Hyder A. “Buz” Jinnah, MD, PhD – Director, Dystonia Coalition • Joel S. Perlmutter, MD – DMRF Scientific Director Monday, June 8, 2026 6pm CT | 7pm ET Register: bit.ly/4un052U

Ignacio Keller Sarmiento, MD, Northwestern U, received a DMRF research grant for “Integrative Transcriptomic & Machine Learning Framework for Novel Dystonia Gene Identification.” He will analyze brain gene-expression and ID potential new dystonia genes. bit.ly/4v1UTkO

Portland Dystonia Zoo Day is coming to the Cascade Ballroom of the Oregon Zoo on July 18. Sign up by the t-shirt registration deadline on July 1 so everyone can see that you are a part of the DMRF Zoo Crew! bit.ly/3x7wdPo #dystonia #dmrf #dystoniafoundation

The DMRF has awarded a research grant to: Darius Ebrahimi-Fakhari, MD, PhD & Katerina Bernardi, MD, of Boston Children’s Hospital for “Creating Clinical Trial Readiness for cAMP-Related Dystonias through Natural History Characterization and Therapeutic Discovery.” #dystonia #dmrf

Good sleep is among the top self-care activities that can help you cope with the non-motor symptoms of dystonia. During Mental Health Awareness Month, it's important to focus on self-care activities that promote good sleep health. bit.ly/4dcGzA5 #dystonia #dmrf

Your membership matters: Supporting the Dystonia Medical Research Foundation ensures that resources are available for the dystonia community. Renew your DMRF membership by June 15 and receive a free gift. bit.ly/48ZrYmL #dystonia #dmrf #dystoniafoundation

The DMRF has awarded six grants and fellowships for basic and clinical dystonia research projects, which will support scientists investigating the underlying causes and mechanisms of dystonia and developing new treatment strategies. bit.ly/4cVUcU4 #dystonia #dmrf

Deadline 5/16: Medicare changes may restrict access to botulinum toxin treatment for dystonia. This treatment is life-changing. You can help by submitting a comment using a simple template letter (link). Let’s advocate to protect access to essential care. bit.ly/3QMEr9p

Deadline 5/16: Medicare changes may restrict access to botulinum toxin treatment for dystonia. This treatment is life-changing. You can help by submitting a comment using a simple template letter (link). Let’s advocate to protect access to essential care. bit.ly/3QMEr9p

The Dystonia Dialogue is a benefit of your membership. Thousands of readers rely on the Dialogue for the latest news on dystonia research, treatment and personal profiles. Renew your DMRF membership by June 15 and receive a free gift. bit.ly/48ZrYmL #dystonia #dmrf

Action Needed: Medicare contractors (MACs) might limit how doctors use botulinum toxin injections to treat dystonia. YOUR voice matters. Comments are open until May 16, 2026. Speak Up Now! Use this (link) letter and send to your regional MAC. bit.ly/3QMEr9p #dystonia

Dystonia is a disorder that affects the body, but the impact goes far deeper. During Mental Health Awareness Month, it's important to acknowledge that the non-motor symptoms of dystonia can be just as disabling as the involuntary movements and postures. bit.ly/3OQN16p

May 10-16 is National Women's Health Week: Many women feel that doctors and health providers don’t listen to or take them seriously. The DMRF's "Find a Doctor" directory of physicians and healthcare providers is important to getting an accurate diagnosis. bit.ly/4fEn0hJ

Happy Mother’s Day. Today we celebrate the women in the dystonia community—those living with dystonia, those caring for a loved one, and those advocating for research every day. Your support lifts others, your voice raises awareness, and your love inspires hope. #dystonia

Deadline 5/16: Medicare changes may restrict access to botulinum toxin treatment for dystonia. This treatment is life-changing. You can help by submitting a comment using a simple template letter (link). Let’s advocate to protect access to essential care. bit.ly/3QMEr9p

Save the date! Portland Dystonia Zoo Day is coming to the Cascade Ballroom of the Oregon Zoo on July 18 (same zoo, new location). Join supporters to raise awareness, research funding and community connection. Learn more and register today! bit.ly/3x7wdPo #dystonia #dmrf

Proposed Medicare policy changes may restrict botulinum toxin usage—limiting personalized care that many patients depend on. Comments are open through May 16. Consider sending a letter. Patients deserve tailored care—not one-size-fits-all rules. bit.ly/3QMEr9p

Action Needed: Medicare contractors (MACs) might limit how doctors use botulinum toxin injections to treat dystonia. YOUR voice matters. Comments are open until May 16, 2026. Speak Up Now! Use this (link) letter and send to your regional MAC. bit.ly/3QMEr9p

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 May e-news is now available. conta.cc/4uysFxV #dystonia #dmrf #dystoniafoundation

The Dystonia Medical Research Foundation appreciates your generous support. Read about the important accomplishments that you made possible in DMRF’s 2025 Annual Report. bit.ly/4cNR8b9 #dystonia #dmrf #dystoniafoundation