Support Groups

Red stars = local meetings; Blue stars = FSHD Family Day conference sites

For upcoming meetings, see the Event Calendar.

To start your own regional patient network meeting, just contact the FSH Society. We can share best practices and help with outreach to patients in your area.

Find A Group Near You

Arizona, Tucson member network
Ray Jordan and Cyndi Segroves host an informal, social get-together a few times a year, with occasional guest speakers. If you would like to participate, please contact Ray Jordan.

California, Bay area member network
Meets 2-3 times per year at Stanford Hospital. Check out and “Like” the Bay Area FSHD Facebook page.  If interested in attending meetings, please contact the FSH Society.

California, Los Angeles member network
Meets 3-4 times per year for socializing, support, health advice and more. They will post notices on Facebook (private group; you need to ask to join). If interested, please contact Laurie Heyman.

California, Sacramento member network
Meets 3-4 times a year in the Sacramento/Davis area. Socializing, guest speakers. Must bring sense of humor. If you are interested, please contact volunteer organizer Karen Dunkerly.

California, San Diego/Orange County member network
Meets at various times during the year in and around San Diego and Orange County to socialize and work together on patient education and support, fundraising and advocacy. Check out the FSH Society So Cal Facebook page and contact Amy Bekier. Phone (619) 786-2644.

Colorado member network
Meets several times per year for socializing, organizing advocacy and fundraising activities. “Like” the FSH Society Colorado Facebook page and contact Beth Johnston or call 914-733-2765 to join.

Connecticut member network
Meets monthly online on the first Thursday night of each month. Open to everyone, regardless of geographic location. For more information, contact Kathy Senecal.

Florida member network
We have meetings in Miami and Tampa. We would like to expand to the Jacksonville area. If you are interested in helping to organize, please contact the FSH Society.

Illinois. Chicago member network
Launched in 2016 to serve patients and families in the Chicago area. Meeting several times a year to share stories and knowledge, emotional support, and to hear invited experts. Join their Facebook group to stay up to date.

Michigan member network
For patients in and around the state of Michigan. Volunteer organizers meet 3-4 times a year. If you are interested, please contact Amy Tesolin-Gee.

Mid-Atlantic member network
Meets 2-3 times per year in the Capitol region (Washington DC-Baltimore-Virginia), including at the Kennedy Krieger Institute Outpatient Center at 801 North Broadway in Baltimore. Socializing, guest speakers, cutting-edge research, resources for living with FSHD, etc. If interested, please contact the FSH Society.

Minnesota member network
Patients in the Minneapolis/St. Paul region are meeting around twice a year. If you are interested, please contact the FSH Society.

New England member network
This group will meet in locations around New England 2-3 times per year. If you are interested, please contact the FSH Society.

New Jersey/Greater Philadelphia area member network
Social gathering, guest speakers to talk about medical and scientific advances. Hosted by Ellen Schechter Berger. If you are interested, please contact the FSH Society.

New York City and Long Island networks
Meets several times a year. For more information, please contact the FSH Society.

North Carolina member network
Meets ~3 times a year, with location rotating between Charlotte, Research Triangle Park, and Winston-Salem. If interested, please contact volunteer organizer Deborah Woolard.

Oregon member network
Is not currently active, but if you would like to get a meeting going in the Portland area, we would love to hear from you. Please contact the FSH Society.

Southwest member network
Meetings hosted by Tulsa-based FSH Society board member Jim Chin, for folks in Oklahoma, Texas, Arkansas, Kansas, Missouri. For updates, check out the FSH Society Southwest Facebook page. If interested in learning more, contact Jim Chin.

Texas. Austin member network
Planning to meet twice a year. If interested, please contact the FSH Society.

Texas. Dallas member network
Meets several times a year. If you are interested in joining, please contact Brad and Patty Mauldin.

Western Washington FSH group
We have teamed up with a long-standing Seattle-based patient support group which meets on the fourth Saturday of every month. Details here. Visit their Meet-up page to join. If you are interested, please contact the FSH Society.

Save