Hundreds of people are expected to gather at Citizens Park in Barrington on September 12 for the Chicagoland Walk & Roll to Cure FSHD, a fundraiser aimed at supporting research and community programs for a rare, progressive muscle-wasting disease. The event, held at the Jewel Tea Pavilion and Robert Soule Amphitheater at 511 N. Lake Zurich Rd., has set a regional fundraising target of $150,000, with organizers describing its mission as an effort to change the future for everyone living with the condition.
According to WGN-TV, the walk is billed as the only signature event in North America dedicated to raising funds for FSHD research, cures, and community support. Participants Joanne and her dog Elanor are among those expected to take part, and organizers point people to fshdsociety.org and the event's donation page at give.fshdsociety.org for more information. The Barrington gathering is one stop in a national campaign that has grown considerably since it began.
Facioscapulohumeral muscular dystrophy, or FSHD, is a rare genetic disorder passed down in an autosomal dominant pattern, with a global prevalence estimated between 1 in 8,000 and 1 in 20,000 people, according to the National Institutes of Health. That makes it one of the most common hereditary forms of muscular dystrophy, with outward signs typically appearing by early adulthood. Weakness usually begins in the facial and shoulder muscles before spreading to the trunk and lower limbs, according to the National Center for Biotechnology Information, which notes that while life expectancy for people with FSHD is generally normal, progressive muscle wasting causes roughly 20% of those affected to eventually need a wheelchair.
Local Leadership and a Dog Named Elanor
The FSHD Society's Chicagoland Chapter is led by co-directors Mary Mauch and Suzanne “Suzy” Kosten, both of whom have family ties to the disease and help coordinate regional support networks across Illinois, per the FSHD Society. Mauch was diagnosed with FSHD in 2018, while Kosten's child lives with the condition.
Local advocate Joanne Dalessandro was diagnosed with FSHD in 2024 after a decade-long search for answers, as reported by WLS-TV. She created the “Fido Fights FSHD” campaign, featuring her dog, to build turnout and raise awareness in the community. The station's report notes that Dalessandro manages her symptoms through constant physical movement, including Pilates.
A Campaign That Has Grown Since 2018
The Walk & Roll to Cure FSHD launched in 2018 with just five host cities and has since expanded across North America, raising more than $3.3 million for scientific research and patient support, according to figures shared by the FSHD Society. Proceeds from events like the one planned for Citizens Park go directly toward therapeutic research and community resources.
Founded more than 30 years ago, the FSHD Society describes itself as the world's largest patient advocacy organization for the condition, having invested over $12 million directly into scientific research. The organization also helped co-author the landmark 2001 federal MD CARE Act, which expanded federal funding and NIH research centers for muscular dystrophies, per the FSHD Society.
The Science Behind the Search for a Cure
Scientists have identified abnormal expression of the toxic DUX4 gene in skeletal muscle tissue as the primary driver of FSHD, leading to muscle cell destruction and progressive fat infiltration, according to research published by the National Institutes of Health. Suppressing DUX4 has become the central target of modern drug development for the disease.
That target saw a notable step forward in July 2026, when the U.S. Food and Drug Administration cleared Dyne Therapeutics to begin a Phase 1 clinical trial for DYNE-302, an investigational siRNA therapy designed to selectively suppress DUX4 gene expression in adults with FSHD. But the path to treatment has not been smooth for every candidate. Fulcrum Therapeutics suspended its Phase 3 trial of losmapimod in September 2024 after the drug failed to show statistically significant functional improvement in patients over 48 weeks, illustrating the broader challenges facing neuromuscular drug development. The FSHD Society notes that the trial data was subsequently donated to an industry collaborative aimed at improving future trial designs.
Money raised at community events like the one planned for Barrington feeds directly into that research pipeline, organizers say. WGN-TV's Spotlight Chicago segment featuring the Barrington event airs as part of the station's weekday programming from 1 p.m. to 2 p.m. For families like Dalessandro's, the September 12 gathering at Citizens Park represents both a fundraising push and a chance to stand alongside others navigating the same diagnosis.
