About 12 members of the Sacramento FSH Society Support Group met at Mimi’s Café on February 8th. We 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 president. Chris Ford was in attendance and announced that she was now on the board of directors for the FSH Society and would like to serve as a conduit between the FSH Society and our support group.
Our organizer, Karen Dunkerly, introduced two researchers from UCDavis department of Physical Medicine and Rehabilitation that informed the group about an upcoming trial of Acceleron’s ACE-083 TGF-B drug to be tested in FSHD patients. There were many questions and there was a lot of interest by the group in participating in the trial.
As always we enjoyed the company of the group and we all were able to greet Karen Dunkerly’s new baby boy! Our next meeting will be in May. Date, time and place to be determined. At the future meeting we are planning on having another researcher from UCDavis come discuss one of their many research trials that was just completed.
— Bill Lewis III
Note: For further information about the Acceleron trial, check out our post here.