Welcome to the San Diego Chapter!
Thank you for visiting the San Diego Chapter of the FSHD Society which officially launched in May 2019. We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.
Save the Date for Our 2020 Walk & Roll!
In recent weeks, all of our worlds have been highly impacted by the corona virus pandemic, yet our commitment to our families remains the same.
The FSHD Society has been hard at work on a thoughtful and impactful response to the COVID-19 pandemic, bringing resources to our community to help us all through. We want to do the same on a local level. That is why we must continue to look to the future.
July 11, 2020
Harbor Island Park Drive
1875 Harbor Island Dr.
San Diego, CA 92101
Registration is now open; plenty more details to come! Be sure to keep checking back for updates. We'll see you there!
To contact us directly, please email:
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Please join us! Simply fill out the form in the sidebar to become a member of the San Diego chapter.
Past Events › San Diego Chapter Events
Scott Harper,PhD Join radio host Tim Hollenback via Facebook Live on Wednesday, January 8, at 9:00 PM ET | 8:00 PM Central. His guest this month is FSHD research rock star Scott Harper, PhD, a leader in the effort to develop gene therapy. Harper is principal investigator at the Center for Gene Therapy at the Research Institute at Nationwide Children's Hospital, and associate professor of pediatrics at the Ohio State University College of Medicine, Columbus, Ohio. He is a molecular biologist…Find out more »
Informational Webinar Our webinar on January 20th at noon U.S. Eastern Time will introduce our Voice of the Patient Forum (taking place on April 21) and answer your questions about how to be involved. This meeting is the FSHD Community’s platform to present testimony by patients and family caregivers and educate the FDA on how FSHD has impacted your life or the life of your loved ones. Your input will result in a Voice of the Patient Report that will…Find out more »
Justin and his family at the Magic Kingdom. 9-10 pm ET | 8-9 pm CT | 7-8 pm MT| 6-7 pm ET Join host Tim Hollenback on Facebook Live for a chat with Justin TurfTank VanLanduit, who was diagnosed with FSHD in 2013 at the age of 33. "It was a blow to be told I have a degenerative neuromuscular disease that has no cure," Justin recalls. "I've always been very active with sports, but worse than the realization that…Find out more »