by Kristin Zwickau New England Chapter Director Having a child diagnosed with a complex, serious disease that causes disabilities is a very hard reality for parents to deal with, let… Read More »
FSHD goes to school
We Are Not Alone
BY DAVE LUKAS CRYSTAL LAKE, ILLINOIS The inaugural Chicagoland Walk & Roll to Cure FSHD exceeded every expectation and goal I had. What an amazing day filled with family, community,… Read More »
AFOs with a sparkly dress
BY ALEXANDREA COMSTOCK LETHBRIDGE, ALBERTA, CANADA I grew up not knowing what was wrong with me as I faced the consequences of what I eventually learned was early-onset FSHD. I… Read More »
It’s Time to Act: Take Our Muscle Biopsy Survey
Over the years, researchers have relied on the generosity and courage of our patient community who volunteer for important clinical studies in FSHD. Many of you have given your valuable… Read More »
A Monument of Pearls
BY BELINDA MILLER MANASSAS, VIRGINIA The United States contains some of the most magnificent monuments in the world, both natural and human-made. But few compare to the state of South… Read More »