Dystonia of San Diego

Dystonia of San Diego Be sure to visit our web site at http://www.dystoniaofsandiego.com/ Various muscle groups of the body contract and spasm involuntarily.

Dystonia is a neurological movement disorder affecting children & adults of all ages and ethnic backgrounds. There is currently no cure but treatments are available. Our group is affiliated with the DMRF & the NSDA. We meet bi-monthly at Alvarado Hospital. All are invited & meetings are free.

Here is some information from yesterday's DMRF webinar on the Botox® Complete and copay programs. If you are having diff...
08/05/2026

Here is some information from yesterday's DMRF webinar on the Botox® Complete and copay programs.

If you are having difficulty paying for your medicine, AbbVie may be able to help. Visit AbbVie.com/PatientAccessSupport to learn more. Phone Number: 800-442-6869 or MyAbbVieAssist.com

The portal no longer requires a new password every 90 days.

AbbVie help patients get the medicines and solutions they need through various access and support programs and services, including saving cards, bridge programs and patient assistance programs that provide AbbVie medicines at no cost to eligible patients.

08/05/2026

Help Researchers Understand DYT1 Dystonia
Blood Study Seeking Volunteers

Researchers at Duke University, the University of Florida, and Massachusetts General Hospital are looking for volunteers to help them understand dystonia at the molecular level.

What they're studying: The team is looking at proteins in the blood to find a "biomarker" — a measurable sign that could show whether dystonia is present, and what's driving it in a given person. A reliable biomarker could eventually help doctors:
• Match patients to treatments that target their specific underlying mechanism.
• Track how active the disease is over time.

Why they need your help now: Earlier work with people who have DYT1/DYT-TOR1A dystonia and cervical dystonia turned up promising differences in the blood. The next step is figuring out whether those differences come from carrying the DYT1 gene itself, or from actually having dystonia symptoms. To answer this, the researchers need volunteers who carry the DYT1 gene but have few or no symptoms.

Who can participate:
• People who know they carry the DYT1/DYT-TOR1A gene, with minimal or no symptoms.
• People who might be carriers — for example, anyone with a parent, sibling, or child diagnosed with DYT1 dystonia. You do not need to know your own genetic status to take part, and the research team will not disclose it to you.

Locations: Boston, MA · Gainesville, FL · Durham, NC (the team will help match you to the most convenient site and schedule).

Interested? Email the study team at [email protected] and they'll walk you through next steps. There are no compensation or travel funds available for participation in the study at this time. Study PI: Dr. Nicole Calakos; Duke University.

All are invited to join us for our virtual support group meeting on Sat., 9/12/26 from 1-3:00 p.m. Pacific time when ZOL...
07/30/2026

All are invited to join us for our virtual support group meeting on Sat., 9/12/26 from 1-3:00 p.m. Pacific time when ZOLTAN MARI, MD, FAAN, Ruvo Family Chair & Director of the Parkinson’s Disease & Movement Disorders Program at the Cleveland Clinic Lou Ruvo Center for Brain Health and Adjunct Associate Professor of Neurology at Johns Hopkins University will present on "DYSTONIA UPDATE 2026 - TECHNOLOGICAL ADVANCES AND MY DYSTONIA."
Contact Martha Murphy at [email protected] for the Zoom log-in instructions.

Group website: www.dystoniaofsandiego.com

Info. on Dr. Mari - He is the immediate past Chair of the Movement Disorder Society’s Telemedicine Study Group, Chair of the Parkinson Study Group’s Motor Working Group, and Associate Editor of the Parkinsonism and Related Disorders journal. Previously at Johns Hopkins, Dr. Mari was the director of the movement disorder clinical fellowship training program, the DBS Center, the Parkinson’s Foundation Center of Excellence, the Dystonia Center, and the Parkinson’s & Movement Disorder Center. Since his 2017 transition to the Ruvo Center, Dr. Mari helped establish the Movement Disorder Clinical Fellowship program, which he directs. Dr. Mari also directs the CurePSP’s Center of Care and Parkinson’s Foundation Center of Excellence there – all first and only in the state of Nevada. Recipient of numerous awards, Dr. Mari authored 160 peer-reviewed papers, several book chapters, and patents. He has served as PI or AI on dozens of studies in Parkinson’s disease and other movement disorders, including the highest enrolling PI in TEMPO1 (tavapdon) in the United States.

Join us on Monday, 8/3 at 6:00 p.m. Pacific time for a FREE virtual Laughter Yoga session with RACHEL FRANK!! This is al...
07/30/2026

Join us on Monday, 8/3 at 6:00 p.m. Pacific time for a FREE virtual Laughter Yoga session with RACHEL FRANK!! This is always a fun time and it goes for about 20-30 minutes. Laughter is so good for all of us. Contact Martha Murphy at [email protected] for the Zoom log-in information! To learn more about Rachel, visit

Hi friends! I'm Rachel Frank, a San Diego-based wellness facilitator specializing in Laughter Yoga, breathwork, and improv-inspired team experiences. I help teams, from engineers to executives, reduce stress, strengthen connection, and bring more energy and joy into the workplace.I'm on a mission to...

All are invited to join us for our virtual support group meeting on Sat., 9/12/26 from 1-3:00 p.m. Pacific time when ZOL...
07/16/2026

All are invited to join us for our virtual support group meeting on Sat., 9/12/26 from 1-3:00 p.m. Pacific time when ZOLTAN MARI, MD, FAAN, Ruvo Family Chair & Director of the Parkinson’s Disease & Movement Disorders Program at the Cleveland Clinic Lou Ruvo Center for Brain Health and Adjunct Associate Professor of Neurology at Johns Hopkins University will present on "DYSTONIA UPDATE 2026 - TECHNOLOGICAL ADVANCES AND MY DYSTONIA."

Contact Martha Murphy at [email protected] for the Zoom log-in instructions.

Group website: www.dystoniaofsandiego.com
Group Facebook: www.facebook.com/dystoniaofsandiego

Info. on Dr. Mari - He is the immediate past Chair of the Movement Disorder Society’s Telemedicine Study Group, Chair of the Parkinson Study Group’s Motor Working Group, and Associate Editor of the Parkinsonism and Related Disorders journal. Previously at Johns Hopkins, Dr. Mari was the director of the movement disorder clinical fellowship training program, the DBS Center, the Parkinson’s Foundation Center of Excellence, the Dystonia Center, and the Parkinson’s & Movement Disorder Center. Since his 2017 transition to the Ruvo Center, Dr. Mari helped establish the Movement Disorder Clinical Fellowship program, which he directs. Dr. Mari also directs the CurePSP’s Center of Care and Parkinson’s Foundation Center of Excellence there – all first and only in the state of Nevada. Recipient of numerous awards, Dr. Mari authored 160 peer-reviewed papers, several book chapters, and patents. He has served as PI or AI on dozens of studies in Parkinson’s disease and other movement disorders, including the highest enrolling PI in TEMPO1 (tavapdon) in the United States.

07/13/2026

We had Luke Kramer and Dr. Michael Oldham from Vima Therapeutics with us on Saturday, 7/11 to discuss the Phase 2 clinical trial of a new, oral medication for dystonia, which seems quite promising. We recorded their presentation which is about 23 minutes long before we opened it up for questions. Here's a link:
https://www.youtube.com/watch?v=CRTpJXM6DJg You can also learn more about the study at https://www.stridedystonia.com/

JOIN US FOR A FREE VIRTUAL LAUGHTER YOGA SESSION TOMORROW (MONDAY, JULY 6TH) AT 6:00 P.M. PACIFIC TIME COURTESY OF RACHE...
07/06/2026

JOIN US FOR A FREE VIRTUAL LAUGHTER YOGA SESSION TOMORROW (MONDAY, JULY 6TH) AT 6:00 P.M. PACIFIC TIME COURTESY OF RACHEL FRANK. THE SESSION IS ABOUT 30 MINUTES AT MOST. CONTACT MARTHA AT [email protected] FOR THE ZOOM LOG-IN INFORMATION. THESE SESSIONS ARE SO MUCH FUN AND LAUGHTER IS SO BENEFICIAL FOR ALL OF US. COME AND JOIN US! AND VISIT RACHEL'S YOUTUBE CHANNEL: https://www.youtube.com/

HAPPY 4th OF JULY!!!
07/04/2026

HAPPY 4th OF JULY!!!

All are invited to join us for our next virtual support group meeting on Saturday, 7/11/26 from 1-3:00 p.m. Pacific time...
06/27/2026

All are invited to join us for our next virtual support group meeting on Saturday, 7/11/26 from 1-3:00 p.m. Pacific time. Our guest presenters are Luke Kramer, Director of Patient and Community Partnerships and Dr. Michael Oldham, Vice President Clinical Development from Vima Therapeutics. They will be discussing the Stride study for a new oral medication to treat dystonia. After their presentation and the Q/A, we will then have an informal sharing/discussion session with just our attendees. I do hope that you can join us. For the Zoom log-in information, please contact Martha Murphy at [email protected] Group website: www.dystoniaofsandiego.com

Address

VIRTUAL MEETINGS VIA ZOOM
San Diego, CA
92120

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