Joined October 2021
- Tweets 236
- Following 221
- Followers 157
- Likes 229
3 Photos and videos
FSHD Society British Columbia retweeted
28 Dec 2023
#6 Regenerating human skeletal muscle forms an emerging niche in vivo to support PAX7 cells. @NatCellBiol. tinyurl.com/4j7h7tpf
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FSHD Society British Columbia retweeted
19 Dec 2023
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
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19 Dec 2023
fredhutch.org/en/news/spotli…
@fredhutch continues to unravel the mysterious and complex #DUX4
#fshd #solvefshd #curefshd #musculardystrophy #nmd
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FSHD Society British Columbia retweeted
13 Dec 2023
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.” bit.ly/blogFSHD
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9 Dec 2023
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. ❤️🙏
9 Dec 2023
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.
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FSHD Society British Columbia retweeted
9 Dec 2023
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
9 Dec 2023
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.
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30 Nov 2023
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
fshdsociety.org/wp-content/u…
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FSHD Society British Columbia retweeted
29 Nov 2023
First FSHD UK research team meeting at UCL. When researchers and clinicians meet to pool their strengths to fight FSHD.
28 Nov 2023
Introducing the FSHD UK Research Team
#research #fshd #uk #md #musculardystrophy #clinicaltrials #fshduk
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FSHD Society British Columbia retweeted
29 Nov 2023
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
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29 Nov 2023
Good news for people with FSHD!
#musculardystrophy #fshd #curefshd #nmd #musclegrowth
prnewswire.com/news-releases…
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FSHD Society British Columbia retweeted
17 Nov 2023
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: ow.ly/9xMY50Q8YKh
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17 Nov 2023
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15 Nov 2023
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FSHD Society British Columbia retweeted
30 Oct 2023
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: bit.ly/401tf9q
Wed. Nov. 1: Women on Wellness: bit.ly/3Qe0SBy
#FSHD #CureFSHD #FSHDSociety
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26 Oct 2023
A vital part of the quest for a cure - access. @FSHDCanada
26 Oct 2023
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
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