Join the local FSHD Society chapter in BC.
Support, resources, information, research, #FSHDhacks,#cureFSHD.
We are stronger together.
Tweets by @Asifa604
@FSHD_BC@fredhutch The spotlighted research was funded by the National Institutes of Health, the Friends of FSH Research, and the Chris Carrino Foundation for FSHD.
Friends of FSH Research is proud to have supported the key investigator of this research Danielle Hamm since 2020. #fshfriends
Read about taking a multifaceted approach to treating your FSHD symptoms on our blog! In addition to Dr. Voermans' post, you can catch up on other pieces, like “The Fact Alliance,” “Kitchen Confidential,” and “2023 International Research Congress Summary.” https://t.co/WZLAg2rl2m
For those with rare diseases waiting for a cure, @ProjectMercury_ is everything. This project ensures everyone has access to treatment around the world. Imagine having a cure and not being able to afford it or access it in your country.
This is a model providing real hope. ❤️🙏
Today, 21 world leaders in #FSHD, representing Project Mercury—a collaboration of advocacy groups, pharma, clinicians, and subject matter experts—are convening in Boston. Collectively, we aim to speed the delivery of treatments to families living with FSHD.
The FSHD Society is proud to have a seat at the table today as part of Project Mercury. Follow @ProjectMercury_ to stay up to date about how this patient-led collaborative plans to tackle obstacles in FSHD treatments from a global perspective. #CureFSHD#FSHD
FSHD in the Spotlight! Tune in to see Michael Dickson wear custom cleats as part of the "My Cause, My Cleats" campaign. His cleats support FSHD Global Research Foundation. Thurs, Nov 30 @ 8:15pm ET | 7:15 CT | 6:15 MT | 5:15 PT
#FSHD#MuscularDystrophy#RareDisease#Neuromuscular
Ensuring that promising FSHD therapies do not fail due to preventable hurdles is central to our mission and our work in Project Mercury. Global leaders will convene tomorrow to discuss improving FSHD clinical trials for patients and sites. Learn more: https://t.co/GcNtgQwQ2b
This week, join us for Care Partner Hour and Women on Wellness. It's easy to join! Both meetings will happen virtually via Zoom.
Tues. Oct. 31: Care Partner Hour: https://t.co/v1wdyY8vfc
Wed. Nov. 1: Women on Wellness: https://t.co/615YndTVHw
#FSHD#CureFSHD#FSHDSociety