The suffering that FSHD has caused has also made us stronger people By Meredith Huml Angier, North Carolina The words “no cure” and “no treatment” were dropped casually into […]
Finding strength in our pain
The Future is Now for Natural History Studies
[…] first question a drug company asks when exploring the possibility of developing a drug for FSHD is “do you have natural history study?” That’s how important it is. They won’t want […]
I thought I would never find happiness ever again
[…] 2017. I thought I would never find happiness ever again following our daughter’s diagnosis of FSHD. She was six at the time, and we had never heard of the disease […]
Which symptoms have the biggest impact on your life?
On April 21, the FSHD Society is convening its landmark Voice of the Patient Forum, our community’s opportunity to testify to the FDA on the impact FSHD. An important question […]
We Heard Your Voice
by June Kinoshita, FSHD Society On June 29, 2020, the FSHD Society convened its landmark Voice of the Patient Forum. Patients and family members testified by livestream and email to […]