🎬 Exciting News for #ADA Day! 🎉 We’ve been following the journey of "Good Bad Things," and now, the award-winning film starring Danny Kurtzman, who lives with FSHD, is coming to 50 AMC Theaters across the US on August 15th! The film follows Danny (Danny Kurtzman), an entrepreneur with a physical disability who reluctantly tries a dating app. An unexpected match with Madi (Jessica Parker Kennedy), an enigmatic photographer, challenges him to be vulnerable and sparks a profound journey of self-acceptance with the support of his long-time best friend Jason, (Brett Dier). Buy tickets here: https://bit.ly/3YflBJF
FSHD Society
Philanthropic Fundraising Services
The world’s largest research-focused patient advocacy organization for facioscapulohumeral muscular dystrophy (FSHD) .
About us
The FSHD Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. We have catalyzed major advancements and are accelerating the development of treatments and a cure to end the pain, disability, and suffering endured by one million people worldwide who live with FSHD. The FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone. Our Vision: A world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD) Our Mission: Find treatments and a cure for FSHD while empowering our families Our Strategies: - Accelerate the development of treatments and a cure for FSHD - Increase, engage, and empower our stakeholders - Aggressively leverage and expand resources to support our Mission Our Core Values: Research | Community | Urgency
- Website
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http://www.fshdsociety.org
External link for FSHD Society
- Industry
- Philanthropic Fundraising Services
- Company size
- 11-50 employees
- Headquarters
- Massachusetts
- Type
- Nonprofit
- Founded
- 1991
- Specialties
- Medical research funding, Fundraising and development, Patient education, Advocacy, Rare disease, muscular dystrophy, neuromuscular, and clinician education
Locations
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Primary
Get directions
Massachusetts, US
Employees at FSHD Society
Updates
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Check out the latest episode of FSHD Straight Talk with Tim Hollenback featuring Rob Stemple, a Pennsylvania-based musician and writer. https://lnkd.in/gDFeMtSr
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The FSHD Society is pleased to partner with Dyne Therapeutics for the 2024 The Muscle to Keep Life Moving fundraising event to benefit the early-onset/infantile FSHD community! This annual event raises funds to provide care and support, including critically important mobility equipment, to people living with serious muscle diseases. In partnership with MobilityWorks, Dyne is offering a conversion van to a family with a child under 18 affected by FSHD. If your family would like to be considered, please fill out the application by July 26th. The review committee will select the beneficiaries at the end of the month. Apply now: https://bit.ly/3Ygux1v
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September is just around the corner! Have you registered for the Walk & Roll to Cure FSHD yet? Head to https://lnkd.in/gF2FSBY4 to find an event near you! “Being able to facilitate the Walk & Roll, and connect with friends, old and new, who share similar experiences is incredibly empowering. It's a reminder that we're not alone in this fight, and together, we can make a difference.” -Marybeth McCabe, New Jersey Shore Walk & Roll, “Team McCabe”
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“You could be gardening, it doesn't matter, as long as you're moving...to the best of your abilities.” Catch this week's episode of FSHD Straight Talk: https://lnkd.in/gsdEaYY5
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"Our disability is not a failure. It is an opportunity to learn about ourselves, grow, and find community." Check out Marisa's accounts for phenomenal videos about living with FSHD: @Disabledinnature Thank you for sharing your stories! We received so many, we can keep celebrating.🧡 #CureFSHD #FacesOfFSHD #WorldFSHDDay
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Read Gracie's story and check out her album "I Can't Be Anything But Human!" https://ow.ly/2x7R50SqmrQ Thank you for sharing your stories! We received so many, we can keep celebrating.🧡 #CureFSHD #FacesOfFSHD #WorldFSHDDay
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"Faith and resilience keep me strong. Let us move forward without fear." Thank you for sharing your stories! We received so many, we can keep celebrating.🧡 #CureFSHD #FacesOfFSHD #WorldFSHDDay
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"I hope all Latin American patients can participate in the new treatments for FSHD." Thank you for sharing your stories! We received so many, we can keep celebrating.🧡 #CureFSHD #FacesOfFSHD #WorldFSHDDay
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