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Week of Events
Bay Area Walk & Roll to Cure FSHD
Bay Area Walk & Roll to Cure FSHD Sunday, September 15, 2024 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your... Read More »
2024 Mid-Atlantic Walk & Roll to Cure FSHD
2024 Mid-Atlantic Walk & Roll to Cure FSHD Saturday, September 21, 2024, Registration opens at 9:30am Alpha Ridge Park, Marriotsville, MD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a... Read More »
2024 San Diego Walk & Roll to Cure FSHD
2024 San Diego Walk & Roll to Cure FSHD Saturday, September 21, 2024, 8:30am Harbor Island Park, San Diego, CA Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art... Read More »
2024 North Carolina Walk & Roll to Cure FSHD
2024 North Carolina Walk & Roll to Cure FSHD Saturday, September 21, 2024 Registration starts at 10:00am and the Walk starts at 10:30am Goat Island Park - Large Shelter, 141 8th Ave, Cramerton, NC 28032 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you.... Read More »
2024 International Walk & Roll to Cure FSHD
2024 International Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media... Read More »
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Young Adults
Young Adults
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Professionals is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re just graduating, starting a... Read More »
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Early-Onset Parent Roundtable
Early-Onset Parent Roundtable
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible. We will... Read More »
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FSHD University: Insurance Coverage for Costly Rare-Disease Treatments
FSHD University: Insurance Coverage for Costly Rare-Disease Treatments
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Insurance Coverage for Costly Rare-Disease Treatments As FSHD is entering the era of new therapies, Kelly Maynard, President and Founder and Amy Aikins, Director of Patient Access from the Little Hercules Foundation, will give... Read More »
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North Carolina Chapter “Third Thursdays”
North Carolina Chapter “Third Thursdays”
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are... Read More »