[…] it an ideal place for her family. Chelsea also shares a deeply personal connection to FSHD, navigating life with the condition herself. Her journey inspired her to create HonestlyFSHD, a […]
Speaking honestly
Connecting generosity with purpose
Carolyn Lloyd’s journey as chief development officer of the FSHD Society reflects her lifelong commitment to service and empathy for those affected by chronic illness. Her role as a caregiver […]
Changemaker: Marisa Spain
[…] Sverdrup, creating a safe, open space for people of all ages who were diagnosed with FSHD early in life. The group meets monthly, focusing on shared experiences and life hacks […]
Sacramento meeting report
[…] had a new attendee who moved from Monterey and had never met another person with FSHD until a few years ago when she met the daughter’s of the FSH Society […]
Updated medic alert card
[…] Helen Cave, and Dr. Joshura Benditt, a pulmonologist at the University of Washington. Anyone with FSHD should carry this wallet card, especially if they have breathing issues. In addition to […]