…when I was first diagnosed with FSHD (infantile onset) by Archer Sverdrup, St. Louis, Missouri Progression is unpredictable. Sometimes you may go a year with only minor progression. Sometimes every… Read More »
Ten things I wish someone had told me…
Updated medic alert card
We have released a new version of our Medic Alert Card, with the gracious assistance of Ranae Beeker, RN, Helen Cave, and Dr. Joshura Benditt, a pulmonologist at the University… Read More »
Teachable moments
How do we deal with uncertainty in a positive, productive manner? from the Women on Wellness group. Adapted from notes by Ranae Beeker, RN At our meeting in May, our… Read More »
Nerve mobility and pain
Our May Feeling Fit Zoom group featured Arielle Levy, a physical therapist from Re+Active Physical Therapy founded by Julie Hershberg (a legend in the FSHD community). Following the introductory information… Read More »
Connecting to others is essential to your health
Friendships are built intentionally by Gregg Lichtenstein, Margate City, New Jersey The 1970s band Three Dog Night proclaimed that “One is the loneliest number that you’ll ever do.” For all… Read More »