Springfield, IL – State Senator Darby Hills (R-Barrington Hills) honored Senate District 26 resident Joanne Dalessandro of North Barrington on the Senate floor today with the passage of Senate Resolution 176, declaring June 20 as FSHD Awareness Day in Illinois and celebrating Dalessandro’s extraordinary advocacy for those living with Facioscapulohumeral Muscular Dystrophy (FSHD).
“When faced with adversity, Joanne didn’t step back — she stepped up,” said Senator Hills. “She’s become one of the most powerful voices in the fight against FSHD. It’s an honor to represent her and to help shine a light on the path toward a cure.”
Dalessandro, a lifelong Illinois resident, was diagnosed with FSHD in early 2024 after a decade-long search for answers. The rare, progressive genetic disorder weakens facial, shoulder, arm, leg, and core muscles and currently has no cure. Yet despite this life-altering diagnosis, Dalessandro has emerged as a leading national advocate for FSHD awareness, research, and support.
“FSHD may have changed my life, but it hasn’t changed my spirit. I’ve lost some abilities—but not my drive to make a difference,” said Dalessandro. “With leaders like Senator Hills, other Springfield legislators, the Governor’s office, and the strength of the FSHD community, we’re turning awareness into action and action into hope.”
In 2024, she led the largest FSHD Society Walk in North America, raising more than $110,000 with her team, Joanne’s Warriors. Thanks to her efforts, Illinois now formally recognizes June 20 as FSHD Awareness Day, and for the first time, the Chicago skyline will light up orange with the words CURE FSHD in honor of the occasion.
Dalessandro, joined in the Senate gallery by North Barrington Mayor Eleanor Sweet McDonnell, received a standing ovation after Senator Hills read the resolution aloud.
“Joanne’s story is one of strength—but it’s also a call to action,” added Hills. “This resolution isn’t just about awareness; it’s about telling every Illinoisan facing FSHD that they are seen, supported, and not alone.”
Dalessandro spent 50 years in the building materials industry, including 40 with Saint-Gobain Abrasives. She is also known for her record-breaking fundraising efforts, having raised over $800,000 for the American Cancer Society through local community events.
Senate Resolution 176 passed the Illinois Senate unanimously.
For more information on FSHD and how to support ongoing research, visit fshdsociety.org.