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FSHD Society Walk & Roll

Current CSN senior Heloise Hoffman is an inspiration to all who know her. Heloise was recently featured in an article in Gulfshore Life Magazine, in which her incredible story was beautifully told. In addition to being an outstanding student (NMS Semifinalist), singer, and musician, Heloise is the founder of the SWFL chapter of the Facioscapulohumeral Muscular Dystrophy (FSHD) Society.

Current CSN senior Heloise Hoffman is an inspiration to all who know her. Heloise was recently featured in an article in Gulfshore Life Magazine, in which her incredible story was beautifully told. In addition to being an outstanding student (NMS Semifinalist), singer, and musician, Heloise is the founder of the SWFL chapter of the Facioscapulohumeral Muscular Dystrophy (FSHD) Society. The FSHD Society is a research-based patient organization that seeks to find a cure for FSHD, which Heloise has been living with for several years. FSHD is a devastating genetic disorder causing progressive muscle deterioration, with a quarter of the people with this disease relying on a wheelchair. Without warning, individuals with FSHD can wake up one day having lost the ability to do something they normally did without issue, such as brushing their hair or walking up a flight of stairs. There is no cure yet, but there is hope; a treatment is on the horizon, with the FSHD Society leading the mission of a 2025 cure.  

This past Saturday, Heloise and the Southwest Florida Chapter of the FSHD organized a “Walk and Roll” event at Baker Park in Naples to help raise money for a cure. The event was a huge success, with over 150 people attending and about $75,000 raised to support research and patient care. Many CSN students, families, and faculty were in attendance, as well as many others from the greater SWFL community. After the walk commenced, all involved listened to a moving presentation by Heloise and George Pollock. Mr. Pollock, a fellow FSHD survivor, advocate, and leader of a cross-country FSHD cycling team, spoke about the importance of being involved in this important cause. To cap off this incredible event, Heloise and her band, Lucca’s Beard, comprised of fellow CSN students Ella Cartwright ‘22, Max Goldberg ‘23, Garrison Leach ‘22, Sophia Pezeshkan ‘22, Siena Worland ‘22, and Sky Worland ‘23, played a collection of songs highlighting the passion and hope felt throughout the day. The most touching was their rendition of Rachel Platten’s famous Fight Song, which has special meaning to Heloise as she leads the fights against FSHD. Click here to view some great photos of the day.

Through great personal courage, Heloise has determined to fight back against this disease and not let it take over her or anyone else’s life. Heloise’s personal efforts to contribute to the FSHD research efforts have been astounding. Through the founding of a local FSHD Society chapter, Heloise has raised hundreds of thousands of dollars for researchers, even throughout the COVID-19 pandemic. She also conducted her own research over the summer with professors at Yale University focusing on studying the gene responsible for FSHD and has conducted independent research that is being used by the FSHD International Research Congress on the connection between sleep quality and pain in FSHD patients. This research is the largest of its kind ever done with FSHD patients. She is also a leading voice in nationwide efforts to increase youth involvement in the FSHD Society. Heloise’s voice rings loud and true as she proclaims: “Through activism, fundraising, and research, we will reach a cure by 2025, which is why I’m involved in all three. I stand up for those with my disorder who literally can’t. I’ve decided that although I have FSHD, it does not have me! Every day counts; sitting back is not an option when a solution is literally at our fingertips.” 


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