FSHD Society @FSHDSociety
World’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD). Empowering patients, accelerating therapies. #CureFSHD fshdsociety.org Boston Joined August 2009-
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Every two years, FSHD Connect brings together hundreds of people with FSHD, clinicians, and researchers for two days of learning and workshops. Join us to hear the latest research and meet other FSHD'ers and families like yours! fshdsociety.org/connect2024
Meet Cheryl Hooge, Co-Director of the British Columbia Chapter! We celebrate everyone in the FSHD Community who generously devotes their time and talent to making an impact. #NationalVolunteerWeek
Thank you to everyone who was a part of the Idaho Talent Fest! This unique event was created by Minette Hale, Director of the Idaho Chapter. As we recognize #NationalVolunteerWeek, we are inspired by committed volunteers like Minette who do so much for the FSHD Community.🧡
It’s #NationalVolunteerWeek, and we want to spotlight some of our incredible volunteers who bring us closer to a cure by lending their time, energy, and passion to make a difference. Volunteers like Dana are the heartbeat of the FSHD Society, and we're grateful for all they do!
Tomorrow's webinar is a discussion on the challenges of communicating with those close to you about FSHD, its impact on you, and the support you need. Jennifer Egert, PhD, a clinical psychologist who has FSHD will be moderating the conversation. Register: bit.ly/3TYz5pr
Don't miss the Idaho Talent Fest tonight (Saturday)! Livestream starts at 6:30 MT / 8:30 ET: bit.ly/IdahoTalentFes… You can watch the talent competition and vote on the website. Vote with a donation and help support awareness and funds for FSHD! idahotalentfest.org
The 4th annual Idaho Talent Fest is coming up THIS Saturday, April 13th! Even if you’re not in Idaho, you can support this unique event. You can watch the livestream and vote for your favorite finalist with a donation! Find the livestream here: bit.ly/IdahoTalentFes…
Get a bib for the Falmouth Road Race and run to cure FSHD! The FSHD Society has 6 bibs to give away for this iconic marathon on Cape Cod. Enter the lottery via the link, and we'll draw the lucky winners on April 25th! bit.ly/FalmouthFSHD
The FSHD Navigator combines a network of caring peers and digital resources to support your journey, whatever path you’re on. To contact us for guidance and explore resources visit: bit.ly/FSHDnavigator
Here's a look at our April events! You can always join our Gathering Place events and FSHD University webinars via Zoom, no matter where you live. Visit our Events Calendar for more details and to sign up: bit.ly/FSHDcalendar
Want to make a difference in the fight against FSHD in your own unique way? We have a complete DIY Fundraising Toolkit with dozens of ideas and step-by-step instructions to help you fundraise YOUR way! Find the toolkit here: bit.ly/4a5SBqM
Join Team FSHD Society at the Denver Colfax Marathon! Whether you're running, walking, or cheering, be part of Denver's biggest running weekend on May 18 & 19. Get all the info you need on registration (we’ll reimburse you!) and starting your fundraiser: bit.ly/3vlEYEX.
Check out the latest issue of the FSHD Advocate! Our spring issue is all about ways you can take action right now to improve your well-being. You can read it online here: bit.ly/3OrznDD
Another exciting development for the FSHD Community: a company called Celularity has submitted a request to the FDA for orphan drug designation for PDA-002, a cell therapy aimed at treating FSHD. Read more: ow.ly/xx8850QZfWr
Don't forget to register for this week’s FSHD University webinar on finding reliable info online with Tina Griffin, MLIS! She'll explain how to evaluate sources and determine if what you find is trustworthy. Register here: bit.ly/4algDhm
That's a wrap! The @eu_paladin kick-off in Rome concluded, marking a pivotal moment. A journey filled with productivity and collaboration. Stay tuned for more updates! #PaLaDIn
FSHD News @mpcfshd
626 Followers 185 Following FSHD NEWS over the world. Research and patients networks #FSHD #FacioScapuloHumeral # #WorldFSHDDay = June 20th
Matthew S. Alexander @Matt_Muscle_Guy
5K Followers 4K Following Geneticist, Skeletal Muscle, Drug development, Gene therapies. Non-coding RNA, and Zebrafish Aficionado. All tweets are my own. Instagram @thealexanderlab
WMS @WorldMuscleSoc
2K Followers 663 Following We invite you to the 28th International Annual Congress of the World Muscle Society in 2023. This is the premier annual Congress on #neuromuscular disorders.
Helen Walker @helenmwalker44
657 Followers 1K Following UK Myotonic Dystrophy and UK FSHD Patient Registry Manager and Curator (she/her) *Views my own* #neuromuscular #PatientRegistries #dm1 #dm2 #fshd #RareDisease
Avidity Biosciences, .. @aviditybio
541 Followers 78 Following Avidity Biosciences is pioneering a new class of oligonucleotide-based therapies to address the unmet needs of the rare disease community.
TREAT-NMD @TREAT_NMD
4K Followers 565 Following Advancing diagnosis, care and treatment for those living with neuromuscular diseases around the world
Dyne Therapeutics @Dyne_tx
1K Followers 323 Following Advancing life-transforming therapies for serious muscle diseases. Community guidelines: https://t.co/0XslT2HWqg
Muscular Dystrophy UK @MDUK_News
18K Followers 3K Following We connect a community of over 110,000 people living with muscle wasting and weakening conditions. Together we are stronger. Join us. Our #MusclesMatter.
ENMC @_ENMC
1K Followers 379 Following
carden ♿️ @cardenonwheels
2K Followers 2K Following transit and accessibility 🚇 Board @MARTAarmy 🚌 @letspropelatl 🚴♀️ @disabledsouth 🍑 Chair ATL HR Commission 👷🏻♀️@midtownatl DRC 😺meow 🤓 CPWA
Teresinha Evangelist @TeresinhaEvange
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Muscular Dystrophy Ca.. @MD_Canada
5K Followers 1K Following MDC's mission is to help people with neuromuscular disorders live life on their own terms. #WalkRollMDC #MuscularDystrophy FR: @Action_Musclee
Dumonceaux lab @MyologyLab
244 Followers 107 Following Our group focuses on the development of therapeutic solutions for muscle diseases and FSHD in particular.
FulcrumTx @FulcrumTx
787 Followers 159 Following Clinical-stage biopharma focused on improving the lives of patients with genetic diseases in areas of high unmet need. Guidelines: https://t.co/gPiypRVuKZ
Carrino Foundation @CarrinoFSHD
601 Followers 179 Following The Chris Carrino Foundation for FSHD, a 501(c)(3) dedicated to curing #FSHD and inspiring others thru @ChrisCarrino.
Share4Rare @Share4Rare
2K Followers 999 Following 💻🌍 Collective platform dedicated to promote research in #RareDiseases 🚀 | Tweets en español: @Share4Rare_es | Coordination: @IRSJD_info
JWMDRC @jwmdrc
1K Followers 501 Following John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University #dmd #sma #lgmd #fshd #dm1 #gne #col6 #cnm
FSHD España @fshd_spain
515 Followers 454 Following Asociación Afectados Distrofia Muscular facioescapulohumeral (FSHD) España. Declarada de utilidad pública. #SalvaNuestraSonrisa #fshd #EnfermedadesRaras
World Duchenne Organi.. @worldduchenne
3K Followers 1K Following Global organization to find a cure and viable treatment for those lives affected by dystrophinopathies: Duchenne and Becker Muscular Dystrophy. RT ≠ endorsement
Chris Carrino @ChrisCarrino
5K Followers 512 Following Radio voice of the Brooklyn Nets. NFL on @CompassMediaNet. NCAA's for @Westwood1sports. Working to cure #FSHD with @CarrinoFSHD. Contact: @ifmanagement
Ployrkou @Ployrkoutu8sS4
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Biobd @Biobddev
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Lou Wood @ldwk22
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Richard Hudson @VasaV44362
1K Followers 7K Following If you stay positive in a negative situation you win💪 And if You are the Artist of your own life, Don't hand the print brush to anyone else
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Augustin Naepels @AugustinN
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doug @wiredoug
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The Comedy Professor @ProfessorPete11
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maria jose @josedelab
316 Followers 1K Following Mg. Lic. en enfermería, Esp. C.C y Emergencias. Luchando contra la entropía!
claudia hillebrand @chillebrand73
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Daruieste Speranta Di.. @daruieste25
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MatchRite Care @matchrite
33 Followers 103 Following We are MatchRite Care, the most comprehensive patient-centered platform, giving patients control of their health records.
Gilbert @Gilbert24941495
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Sophie Treleaven @SophieTreleaven
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Charl Cilliers @CharlCilliers11
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Bob @Lyuzzzz_8
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Bill Brown @eyes_of_ibad
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JMick2 @MindfulMik2
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The Med13L Foundation @Med13L_Fdn
70 Followers 646 Following Supporting MED13L families through awareness, research, and community. Connecting hearts and minds to overcome challenges. #NDD #Epilepsy #Autism #ID 🧬💙🧠
The BioPharma Recruit.. @JasonFord6
590 Followers 2K Following Executive Search: @denvillepartner Biotech, Pharmaceuticals and research/patient focused non profits. We help our partners hire transformational leadership.
project-paladin @eu_paladin
44 Followers 15 Following The Patient Lifestyle and Disease Data Interactium (PaLaDIn), is an ambitious Innovative Health Initiative (IHI) funded initiative.
MD.NURNABI SIDDIKI @NurnabiSiddiki
1 Followers 11 Following I am a professional digital marketer and YouTube SEO expert and work with trust thank you.
Canadian Rare Disease.. @CanadianRDN
226 Followers 592 Following Pan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.
Wolf Mueller @wcking78
12 Followers 18 Following
FSHD News @mpcfshd
626 Followers 185 Following FSHD NEWS over the world. Research and patients networks #FSHD #FacioScapuloHumeral # #WorldFSHDDay = June 20th
Matthew S. Alexander @Matt_Muscle_Guy
5K Followers 4K Following Geneticist, Skeletal Muscle, Drug development, Gene therapies. Non-coding RNA, and Zebrafish Aficionado. All tweets are my own. Instagram @thealexanderlab
WMS @WorldMuscleSoc
2K Followers 663 Following We invite you to the 28th International Annual Congress of the World Muscle Society in 2023. This is the premier annual Congress on #neuromuscular disorders.
Avidity Biosciences, .. @aviditybio
541 Followers 78 Following Avidity Biosciences is pioneering a new class of oligonucleotide-based therapies to address the unmet needs of the rare disease community.
TREAT-NMD @TREAT_NMD
4K Followers 565 Following Advancing diagnosis, care and treatment for those living with neuromuscular diseases around the world
Dyne Therapeutics @Dyne_tx
1K Followers 323 Following Advancing life-transforming therapies for serious muscle diseases. Community guidelines: https://t.co/0XslT2HWqg
Muscular Dystrophy UK @MDUK_News
18K Followers 3K Following We connect a community of over 110,000 people living with muscle wasting and weakening conditions. Together we are stronger. Join us. Our #MusclesMatter.
carden ♿️ @cardenonwheels
2K Followers 2K Following transit and accessibility 🚇 Board @MARTAarmy 🚌 @letspropelatl 🚴♀️ @disabledsouth 🍑 Chair ATL HR Commission 👷🏻♀️@midtownatl DRC 😺meow 🤓 CPWA
Duchenne UK @DuchenneUK
5K Followers 953 Following Duchenne UK has one clear aim – to end Duchenne, a devastating muscle-wasting disease. We are the leading Duchenne muscular dystrophy charity in the UK.
Joining Jack @alljoinjack
63K Followers 2K Following We are joining Jack in the fight to find a cure for duchenne muscular dystrophy. Will you?
Muscular Dystrophy Ca.. @MD_Canada
5K Followers 1K Following MDC's mission is to help people with neuromuscular disorders live life on their own terms. #WalkRollMDC #MuscularDystrophy FR: @Action_Musclee
Dumonceaux lab @MyologyLab
244 Followers 107 Following Our group focuses on the development of therapeutic solutions for muscle diseases and FSHD in particular.
FulcrumTx @FulcrumTx
787 Followers 159 Following Clinical-stage biopharma focused on improving the lives of patients with genetic diseases in areas of high unmet need. Guidelines: https://t.co/gPiypRVuKZ
Carrino Foundation @CarrinoFSHD
601 Followers 179 Following The Chris Carrino Foundation for FSHD, a 501(c)(3) dedicated to curing #FSHD and inspiring others thru @ChrisCarrino.
FSHD España @fshd_spain
515 Followers 454 Following Asociación Afectados Distrofia Muscular facioescapulohumeral (FSHD) España. Declarada de utilidad pública. #SalvaNuestraSonrisa #fshd #EnfermedadesRaras
Chris Carrino @ChrisCarrino
5K Followers 512 Following Radio voice of the Brooklyn Nets. NFL on @CompassMediaNet. NCAA's for @Westwood1sports. Working to cure #FSHD with @CarrinoFSHD. Contact: @ifmanagement
Matthew Lanham OBE @MatthewLanham
2K Followers 2K Following CEO of NeuroMuscular Centre charity, Tamla Motown, kissing gate installer, and a narrowboat skipper for over 40 years. Generally hopeful. Big fan of square one
Muscles Matter Martin @MusclesMartin
5K Followers 2K Following #MusclesMatter #LUFC Always fighting 4 @MDUK_News The views expressed here are my own and don’t necessarily reflect those of my employer
Dr Gita Ramdharry (Ph.. @gitaramdharry
6K Followers 5K Following Consultant Allied Health Professional; Physiotherapist; Hon. Assoc. Professor; Research @cnmdrehab; Diversity & belonging ✊🏿✊🏽✊🏼🏳️🌈♿🏳️⚧️(she/her)
ern euro_nmd @euro_nmd
2K Followers 738 Following Building bridges and breaking barriers in rare neuromuscular diseases.
Project Mercury @ProjectMercury_
22 Followers 18 Following The global initiative to speed the delivery of therapies for FSHD
Donna Russo @DonnaRusso0124
406 Followers 702 Following Lead Actress of the EMMY®️submitted "DONNA ON THE GO." Actress / Dancer. TV Academy. Ambassador for the Abilities Expo. B.A. in Dance from Mercyhurst College.
Lauren “Lolo” Spe.. @itsLOLOlove
4K Followers 396 Following Disability is my Lifestyle♿️ Actress/Model/Advocate 👑Founder of Sitting Pretty Prod. 📺Jocelyn on @sexlivesonmax 🎬Indie Spirit Award Nominee
Falmouth Road Race @FalmouthRR
4K Followers 352 Following 2021 will mark the 49th running of the Falmouth Road Race
FSHD_Diagnosis_Donost.. @FshdDonostia
78 Followers 105 Following Plataforma Diagnóstico Molecular. Reference Center in Spain for the diagnosis of FSHD for more than 20 years. OSI Donostialdea/IISBiodonostia. #FSHD@Biodonostia
FSHD Society British .. @FSHD_BC
180 Followers 247 Following Join the local FSHD Society chapter in BC. Support, resources, information, research, #FSHDhacks,#cureFSHD. We are stronger together. Tweets by @Asifa604
Psychology Today @PsychToday
1.3M Followers 899 Following Insight about everybody's favorite subject: Ourselves.
James Kiley, PhD @NHLBI_LUNGDir
3K Followers 2K Following Official Twitter account of the Director, NHLBI's Division of Lung Diseases, part of @NIH. Privacy/comment policy: https://t.co/NdrTvJqdm9
FSHDUK @FSHDUKgroup
159 Followers 86 Following U.K. steering group promoting clinical trial readiness and acting as a portal for anyone interested in FSHD (facioscapulohumeral dystrophy)
SOLVE FSHD @SOLVEFSHD
263 Followers 2 Following We are catalyzing the pace of innovation to accelerate a cure for FSHD.
University of Utah He.. @UofUHealth
21K Followers 4K Following University of Utah Health is the Mountain West's only academic health care system.
University of Utah @UUtah
136K Followers 3K Following Nestled between the foothills of the Wasatch Mountains & Salt Lake City, the University of Utah excels at research, innovation & student success.
The University of Hon.. @HKUniversity
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CHRONICALLY CAPABLE @ChronicCapable
837 Followers 367 Following AI-enabled sourcing, employer branding, education, and analytics —an end-to-end solution for companies to hire top talent with chronic illness & disability
The New York Times @nytimes
55.2M Followers 879 Following News tips? Share them here: https://t.co/ghL9OoYKMM
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70K Followers 11K Following Official account of Virginia Commonwealth University. A public research university with a leading medical center & top programs. #UNcommonVCU
Brain & Life @BrainandLifeMag
41K Followers 1K Following Brain & Life is the leading resource for brain health and neurologic disease. Powered by the trusted neurologists of the American Academy of Neurology.
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Mayim Bialik @missmayim
701K Followers 231 Following Mom, Actor, Author, Neuroscientist, #bialikbreakdown host, Lactation Educator Counselor
PerkinElmer Genomics @PKIGenomics
550 Followers 407 Following A global leader in #genetic and #genomic testing focused on rare diseases, newborn screening, and inherited cancer. Let's end the diagnostic odyssey together.
Revvity @RevvityInc
46K Followers 1K Following Expanding the boundaries of human potential through science. Learn more at https://t.co/AnPOPIWgsv
ABRAFEU @abrafeu
55 Followers 38 Following Iluminando o caminho para a cura da Distrofia Muscular Facio Escapulo Umeral!
Dystrophie musculaire.. @Action_Musclee
472 Followers 421 Following DMC soutient l’autonomie des personnes atteintes de maladies neuromusculaires et leur participation à la vie collective. #MarcherRoulerDMC EN: @MD_Canada
FSHD Europe @FSHDEurope
122 Followers 33 Following FSHD-Europe - The European Voice for people with FSHD
ArrowheadPharma @ArrowheadPharma
3K Followers 218 Following Arrowhead Pharmaceuticals develops medicines that treat intractable diseases by silencing the genes that cause them.
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
AMRA® Official @AMRAMedical
467 Followers 568 Following A new global standard in body composition assessment offers multiple fat & muscle biomarkers with unrivaled precision & accuracy, from a rapid, whole-body MRI
Muscles for Muscles @Muscles4Muscles
31 Followers 9 Following Building Muscles for Those Who Can't! The aim of this campaign is to drive awareness, empathy and support towards finding treatments and a cure for FSHD.
CheckRare @CheckRare
3K Followers 2K Following Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion.
FSHD Birder @fshdbirder
39 Followers 209 Following FSHD is a slowly progressive form of muscular dystrophy. My adaptive birding equipment allows me to fully enjoy birding.
Ric Scripps @RicScripps
4 Followers 9 Following
Julie Dumonceaux @J_Dumonceaux
67 Followers 27 Following
Steve Way @thesteveway
4K Followers 560 Following Actor. Comedian. Writer. Speaker. Very disabled. On @Hulu Ramy [email protected] https://t.co/Hlb6zRiGMn Speaking Inquiries: @collectivespkrs
FSHD Lab Rat @Fshdlabrat
31 Followers 6 Following Late onset FSHD Type 1 affected male interested in research for treatment or cure.
Chris Strub @ChrisStrub
16K Followers 2K Following CEO, @IAmHereLLC ▪️ @GivingDayGuy livestream host and producer▪️ @50States100Days author ▪️ Running 13.1 across the USA (48/50) 🇺🇸 ▪️ Former blue check
Silvere vd Maarel @MaarelSilvere
83 Followers 41 Following
Colorado Air and Spac.. @coairandspace
381 Followers 127 Following Colorado Air and Space Port will serve as America’s hub for commercial space transportation, research, and development.
Ben Porter @bc_porter
719 Followers 972 Following Programme Manager working in #health #technology #innovation Interests: athletics, cake, CrossFit, health innovation & horizon scanning 🏳🌈🇬🇧
MDA Greater SC @MDAGreaterSC
487 Followers 478 Following MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research and programs.
Merrill Barr @MerrillBarr
5K Followers 594 Following 📝 Wordsmith & Entertainment Enthusiast 📺 | Disabled but Unstoppable 💪
Bionano @bionano
30K Followers 2K Following Transforming the way the world sees the genome using #OGM solutions, Dx services, and software. For Research Use Only. Not For Use In Diagnostic Procedures.
Bravo @HBO @StreamOnMax for new Hop kids series from Arthur creator, Marc Brown. Thanks for authentic disability representation collaborating with #RespectAbility to further disability respect and acceptance. Proud to serve on their Advisory Board #Hop #HBOMax…
A first-of-its-kind animated children's show featuring a cast of characters who all have some type of disability is coming to television. disabilityscoop.com/2024/03/25/hbo… #disabilities
Score one for inclusion! "Hop" is coming to HBO Max in April! ❤️ Geared for pre-schoolers, this groundbreaking animation features an ensemble cast of characters who all have some type of disability. disabilityscoop.com/2024/03/25/hbo…
That's a wrap! The @eu_paladin kick-off in Rome concluded, marking a pivotal moment. A journey filled with productivity and collaboration. Stay tuned for more updates! #PaLaDIn
My condition #FSHD is considered a rare disease. Today is #RareDiseaseDay2024 Thank you for all the support for @CarrinoFSHD #jazzycarbon #pridemobility
We are honored to have hosted the @FSHDSociety San Diego Chapter meeting at Avidity this month to celebrate the #holiday season. It was wonderful to connect with the #FSHD community as we continue to advance research for patients and their families!
Thank you to our partners, @LS_Cares, @c2cboston, @MassDCR, @HealthyWaltham, @nevinsfarm, @ufiboston, @FSHDSociety, and @sowma for the opportunity to #giveback to our local #community
Our FULcrew held a company-wide walk around our campus in Cambridge, MA, marking one of the October walks dedicated to supporting the @FSHDSociety Walk and Roll! #fshd #raredisease #biotech #fulcrumtherapeutics
Our FULcrew recently participated in the @FSHDSociety's annual Walk & Roll. The Walk & Roll to Cure FSHD is the only signature event held across North America, singularly focused on funding progress for FSHD. #fulcrumtherapeutics #fshd #raredisease #fsdhsociety
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
FUNDED!!! It is a great honor for me to continue carrying the FSHD torch! After the completion of the first funded project on WDR5 as therapeutic target (lnkd.in/d_WbfzWE) it is time to go ahead and carry my research on FSHD to a new therapeutic avenue! @FSHDSociety
Cold and flu season 2023 is officially here, and those living with FSHD must proactively safeguard themselves due to their added vulnerabilities. Our friends at the @FSHDSociety shared fall vaccine recommendations by @dr_kkjetelina to guard against the most common viruses.
Thanks to our amazing Avidity team for making our annual #Halloween contest another spooktacular event this year! We had a fun time admiring clever costumes & enjoying imaginative food creations. Huge congrats to our talented winners & kudos to the team for creating a good time!
Weather shaped up and it was a fantastic day for @FSHDSociety Minnesota Walk N Roll! Love my family and all the support we got; Thank U everyone!
YOU can help me cure a disease!! ❤️🙏🏻 Link in bio give.fshdsociety.org/team/508761 @FSHDSociety #walknrolltocurefshd #fshmusculardystrophy instagram.com/reel/CvkSAbtN6…
Avidity is proud to serve on the Global Task Force of Project Mercury, an open collaboration by @FSHDSociety to optimize the world-wide clinical trial infrastructure & remove the barriers that delay patient access to therapies once approved. Learn more: fshdsociety.org/project-mercur…
#Medicina A Lorena Di Pietro il Best Young Investigator Award della @FSHDSociety. La ricercatrice @Unicatt premiata per il lavoro di ricerca sul processo di degenerazione muscolare e le nuove terapie per la rigenerazione dei tessuti secondotempo.cattolicanews.it/news-a-lorena-…
@MrBeast Giving it all to find a cure for FSHD so that thousands of kids and adults can have a better life without MD @FSHDSociety @facesoffshd @FSHD #findacure #fshd #MD
Pacientes e investigadores unidos para encontrar una cura también se unen al reto #OrangeSliceChallenge durante el Congreso Internacional sobre #FSHD que ha organizado @FSHDSociety el pasado fin de semana en Milán. #WorldFSHDDay #salvanuestrasonrisa @FSHDEurope
we lit up the King 🤴 and Queen 👸🏻 building orange in honor of #worldFSHDday the type of MD that I have. a beacon of hope for a bright future 🧡🍊did you see it tonight #atlanta? @FSHDSociety
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