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 »
We Are Not Alone
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 »
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 »
Listen to our Giving Tuesday Interviews
You can now listen to our GivingTuesday Telethon interviews from our December 3rd event. Streamed over Facebook Live, our Telethon host Tim Hollenback interviewed dozens of leaders in our community—activists,… Read More »
I thought I would never find happiness ever again
BY KRISTIN ZWICKAU CHARLESTOWN, MASSACHUSETTS It was October 2017. I thought I would never find happiness ever again following our daughter’s diagnosis of FSHD. She was six at the time,… Read More »