Top Tweets for #facesoffshd
Thank you to everyone who supported our #FSHDWalkRoll events this past weekend in British Columbia, the US Mid-Atlantic, Michigan, Ontario, San Diego, and Utah plus DIY fundraisers in Tampa, FL and San Antonio, TX.
Read our full recap: https://t.co/KAo86njJR1
#FSHD #FacesofFSHD
Congratulations to Team All4Lucas who raised $16,500 to during this past weekend's International Walk & Roll to #CureFSHD. We're glad you had a beautiful day to gather and raise awareness!
#FSHDWalkRoll #FacesOfFSHD
The FSHD Connect 2026 Conference brought together researchers, advocates, and members of our community to power the path forward. We sat down with attendees to ask why they chose to attend Connect FSHD 2026.
#FSHD #FacesofFSHD #VoicesofFSHD
The FSHD Connect 2026 Conference brought together researchers, advocates, and members of our community to power the path forward. We sat down with attendees to ask about their favorite part of the conference.
#FSHD #FacesofFSHD #VoicesofFSHD
The FSHD Connect 2026 Conference brought together researchers, advocates, and members of our community to power the path forward. We sat down with attendees to ask them why they chose to come to the event.
#FSHD #FacesofFSHD #VoicesofFSHD
Meet Douwe Terpstra, following his father's path from the Netherlands to Spain: biking to raise awareness about #FSHD. Veel succes Douwe!
"Ik kon niet alles doen zoals anderen. Maar ik deed het wel."
Donate: https://t.co/BsNLif6QS0
#CureFSHD #VoicesOfFSHD #FacesOfFSHD
Meet "Slice of FSHD", a 16yr old public speaker, dancer, and content creator living with FSHD. Her tiktok will feature her perspective on life with FSHD in addition to recipes - usually featuring ๐๐๐!
Handle: sliceof.fshd
#FacesOfFSHD #VoicesOfFSHD #FSHD
Today, June 20th, marks World FSHD Day ๐
Across our AMRA family worldwide, weโre showing our support for the FSHD community today with a simple orange-slice smile!
#WorldFSHDDay #FSHD #CureFSHD #FacesOfFSHD #AMRAMedical
We want to hear from YOU๐งก๐
Join us in celebrating #WorldFSHDDay by sharing your stories and experiences! Send us a DM with your story or use our story form linked below to be featured.
https://t.co/WX6fruLLkI
____
#WorldFSHDDay #VoicesofFSHD #FacesofFSHD #CureFSHD
"One of the hardest parts hasnโt been the physical changes, but rather how people see me."
Read Alena's full Guest Voice post on @mdnewstoday_
https://t.co/TCwG8bGptZ
#FSHD #VoicesOfFSHD #FacesOfFSHD #RareDisease
Congratulations to Dr. Fran Sverdrup on being named to the 2026 Class of Senior Members of the National Academy of Inventors (NAI).
Read the profile of Dr. Sverdrup here: https://t.co/pfFa8FY1D9
#FacesOfFSHD #FSHD #FSHDResearch #CureFSHD #TranslationalResearch
Our North Carolina Chapter members had a blast at last weekend's baseball outing!
No one needs face FSHD alone with our chapter program. Find your local community today: https://t.co/zAe1T69Gxk
#FSHD #FacesOfFSHD #VoicesOfFSHD #CureFSHD
August has been busy with chapter events in Western PA, New England, the Pacific Northwest, & San Diego! We look forward to connecting with more of our community at this weekend's North Carolina baseball game.
#FacesOfFSHD #FSHD #CureFSHD
Marion Sellenet, an artist living with FSHD, shared her film "Marion, or The Metamorphosis" at the 2025 IRC and inaugural FSHD Connect-Europe. Rent it today!
Rental Link: https://t.co/hJajH9b1ke
#FSHD #FacesOfFSHD #VoicesOfFSHD #DisabilityPride #DisabilityPrideMonth
"We won't quietly surrender to this condition!" Michael Ahlers rides again to raise awareness about #FSHD. This weekend, he will complete the 120mi Triple Bypass: https://t.co/K1UMCHPsVT
#TripleBypass2025 #CureFSHD #RareDisease #RareWarriors #FacesOfFSHD
In honor of World FSHD Day, we're sharing stories submitted by YOU! Check back every day this week for community profiles, unique perspectives, and our annual campaign to power the path forward as we raise awareness about #FSHD. ๐งก๐
#WorldFSHDDay #WorldFSHDDay2025 #FacesOfFSHD
We want to feature your story in honor of #WorldFSHDDay. Send us a DM or use our new Story Form. ๐งก๐
https://t.co/ThqGiWrrXY
#FacesOfFSHD #VoicesOfFSHD #FSHD #CureFSHD #RareDisease #RareWarrior
Love FSHD Straight Talk? Want to be a featured guest? Have a topic you'd love to hear Tim cover?
Email Tim at [email protected]
Catch previous episodes on YouTube, Spotify, & wherever you get podcasts!
#FSHD #FacesOfFSHD
Congrats to Johnny Quintana, who placed 4th during the 2025 USA ParaClimbing National Competition! Johnny can now compete in the World circuit and push towards his goal of climbing in the 2028 Paralymics. ๐ง๐งก๐โค๏ธ
#FacesofFSHD #USAClimbing
Meet Bill Sarraille, JD, a recently retired healthcare lawyer living with #FSHD. Head to our blog to read about Bill's family connection to FSHD and hear his advice for future advocacy.
https://t.co/WpEgKkcyhp
#FacesOfFSHD #CureFSHD #RareDisease
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