A new support group met for the first time in Sacramento, CA on August 19th at a centrally located restaurant. We had 10 attendees from the larger Sacramento area. About half the attendees were affected by FSHD and the other half were family members. Ages ranged from twenties to retired.
The group was really positive and fun. We introduced ourselves and spoke of when we were diagnosed, affected and unaffected family members, and how we were all still being very active socially and professionally. One member thought the group might be more of a grief counseling group but was thrilled to find that we were quite jocular. (Thanks Tim and Dave! Keep up the good work.) I suggested that we form a band, as many members were/are musicians. I thought harmonica might be good! (Y’all should get the joke.)
The group suggested that we begin as a social group and throw in FSHD information as part of the agenda. UC Davis Medical Center is in our area and has an active muscular dystrophy clinic. We will ask a member of the UCD Physical Medicine and Rehabilitation Department to attend the next meeting as there were many questions about assistance/mobility devices, insurance coverage, tax write offs, etc.
Karen Dunkerly, who suggested the formation of the group, was volunteered to be the organizer for the next meeting. We decided that a quarterly meeting would be good and plan to meet again in early November. We are sure the group will grow as word gets out, so anyone willing to travel to Sacramento on a Wednesday night in early November should contact Kristin Duquette at the FSH Society to be added to our roster.