Join us in Honoring the Moms in our Community
With Mother's Day approaching, we would like to take a moment to celebrate the amazing moms in the FSHD Community.
Being a mother is learning about strengths you didn't know you had, and dealing with fears you didn't know existed.
Carol Perez was not just the mother of FSHD Society’s co-founder Daniel Perez. In many ways she was the mother (some might say fairy godmother) of the Society itself.
Diagnosed with FSHD as she entered adulthood, Carol was told she had only four years to live. (Doctors did not know much about FSHD back then.) When her allotted time ran out and Carol realized she was very much still alive, she embarked on a mission to help countless numbers of people with disability and disease to lead better lives. She sought to see the best in every individual and was tireless in her battle against injustice to the ill and handicapped.
When families called the Society in distress, it was Carol who answered the phone and assured them that they would be okay. We lost Carol in 2012 from pulmonary complications of FSHD, but her legacy lives on in the work of the FSHD Society. She was an amazing mom—to us all.