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[…] an organization to better serve you and reach our goal of finding a cure for FSHD. This will be a great opportunity to meet many of the staff members in […]
[…] Barbara changed the lives of many patients and families through her peer counseling. The entire FSHD community owes her so much. Barbara’s bequest helps ensure that future generations will enjoy lives free […]
[…] Here are the findings, summarized in a slide presentation given by June Kinoshita, FSH Society executive director, at the European Neuromuscular Center’s international workshop on FSHD patient registries. Download here: FSHSociety-ENMC Workshop
[…] asymptomatic. I am still fairly active. Prior to my genetic diagnosis of being positive for FSHD in 2011, I ran two NYC marathons in 2008 and 2009. I am thinking […]
[…] other that allowing ourselves to grieve when we experience a loss in our fight over FSHD is quite important, so that we can get back up and continue to live […]
