FSHD Society opens its first global, online educational conference

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The world’s premier conference on facioscapulohumeral muscular dystrophy, a rare muscle disease, expands its reach by going online

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"Our community has stood by us, knowing that the vital work of our community must prevail against the challenges of these times.”

The FSHD Society announced the opening today of its FSHD Connect Classroom, the first online, full-day educational conference in the organization’s history. The online conference takes the place of FSHD Connect, the premier global educational meeting for facioscapulohumeral muscular dystrophy (FSHD), which was cancelled this year due to COVID-19. Nearly 300 individuals and families living with FSHD are attending the online meeting, alongside researchers, clinicians, industry representatives and patient advocacy organizations from around the world.

“Because of COVID-19, we had to switch from an in-person meeting to online, but this has opened the opportunity to participate for many families who previously were unable to attend,” noted Mark Stone, CEO of the Society. “Our organizing committee has devised an informative and exciting program everyone living with FSHD will want know. We hope attendees will come away feeling invigorated, empowered, and entertained.”

This year’s program will include an exciting array of talks explaining the cause of FSHD, how to address symptoms, make adaptations to homes, use orthotics, and understand the benefits of psychodynamic approaches to managing chronic conditions like FSHD. Leading researchers will explain various strategies and the progress being made toward developing treatments.

The field is in the midst of a Phase 2b clinical trial for the first disease-modifying therapy for FSHD. Researchers speaking at FSHD Connect Classroom will discuss how this trial as well as a large natural history study called ReSOLVE have responded to the challenges of collecting data while keeping volunteers safe during the COVID-19 pandemic.

The 2020 FSHD Connect Classroom will also recognize two individuals who have made outstanding contributions to the FSHD Society. Amy Bekier of San Diego, California, is receiving the Community Hero award for her decades-long advocacy and service as founder of the Southern California Celebrity Walk & Roll to Cure FSHD, Director of the San Diego Chapter, and member of the FSHD Society board of directors. Judith Seslowe, of White Plains, New York, will receive the Legacy Award for chairing many fundraising events, including the Festive Evening of Song, a benefit concert and appeal, that was held from 2009 to 2019 and raised more than $2.3 million. “We are delighted to honor these 2 people in our community that have gone above-and-beyond to raise awareness and critical funds for everyone living with FSHD,” says Beth Johnston, Chief Community Engagement Officer.

This year’s foundation and industry supporters include: Allard, the James Chin Scholarship Fund, National Institutes of Health, Optum Health, and PerkinElmer Genomics.

“The dedication and generous support of our community and sponsors is what makes events like FSHD Connect Classroom possible,” said Stone. “They have stood by us, knowing that the vital work of our community must prevail against the challenges of these times.”

About the FSHD Society
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. The Society has catalyzed major advancements and is 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. The Society offers a community of support, news, and information through its website at https://www.fshdsociety.org.

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June Kinoshita
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