FSHD Society British Columbia

Join the local FSHD Society chapter in BC.
Support, resources, information, research, #FSHDhacks,#cureFSHD.

We are stronger together.

Tweets by @Asifa604

[World Muscle Society @WorldMuscleSoc]

#6 Regenerating human skeletal muscle forms an emerging niche in vivo to support PAX7 cells. @NatCellBiol. https://t.co/pCRYKq46AJ

[Friends of FSH Research @FSHresearch]

@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

[FSHD Society British Columbia @FSHD_BC]

https://t.co/qXJUHSGWWH

@fredhutch continues to unravel the mysterious and complex #DUX4

#fshd #solvefshd #curefshd #musculardystrophy #nmd

[FSHD Society British Columbia @FSHD_BC]

https://t.co/BPeSN74c9c

[FSHD Society @FSHDSociety]

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

[FSHD Society British Columbia @FSHD_BC]

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. ❤️🙏

[Project Mercury @ProjectMercury_]

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.

[FSHD Society @FSHDSociety]

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 Society British Columbia @FSHD_BC]

https://t.co/4oepKRHmLG

#fshd #curefshd #solvefshd #technology #Disability #nmd #TechForGood

[FSHD Society British Columbia @FSHD_BC]

Check out this resource for caregivers from @FSHDSociety. Great information on how FSHD impacts someone and ways friends and family can support them.

#curefshd #fshd #musculardystrophy #nmd #Caregivers #raredisease

https://t.co/yOvGqIATYe

[Dumonceaux lab @MyologyLab]

First FSHD UK research team meeting at UCL. When researchers and clinicians meet to pool their strengths to fight FSHD.

[FSHD Society @FSHDSociety]

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

[FSHD Society British Columbia @FSHD_BC]

Good news for people with FSHD!

#musculardystrophy #fshd #curefshd #nmd #musclegrowth

https://t.co/xvLfZECqEV

[FSHD Society British Columbia @FSHD_BC]

@FSHDSociety Great news. Will there be an update on results from the meeting? Is any of it public?

[FSHD Society @FSHDSociety]

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

[FSHD Society British Columbia @FSHD_BC]

🙏
https://t.co/FoFJ8Ot9pr

[FSHD Society British Columbia @FSHD_BC]

👍👍
https://t.co/DWt3lByN7K

[FSHD Society @FSHDSociety]

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

[FSHD Society British Columbia @FSHD_BC]

A vital part of the quest for a cure - access. @FSHDCanada

[FulcrumTx @FulcrumTx]

In several recent posts, we have mentioned the new Project Mercury initiative. We thought it would be helpful to elaborate more on how Fulcrum is joining forces with the @fshdsociety and many other partners. #fulcrumtherapeutics #fshdsociety #projectmercury #fshdawareness