Nearly 150 community members came together on Saturday, September 12, for Jett Foundation’s World Duchenne Awareness Day luncheon at the Tiffany Ballroom in Norwood, Massachusetts. The energy was contagious as families, individuals living with Duchenne, pharmaceutical representatives, medical professionals, and Jett Foundation staff and board members gathered for an afternoon filled with laughter, hope, and powerful connections.
Throughout the afternoon, guests caught up with familiar faces and forged new friendships–striking poses in the photo booth, leaving heartfelt notes on the advice wall, and getting creative with a wooden guitar decorating contest!
For Lisa Lee, whose son Sammy lives with Duchenne, the luncheon was a chance to meet families from as far away as Poland and reflect on the relationships she has built through Jett Foundation. “As we were driving home, we were talking about how we take for granted that we have Jett Foundation doing this sort of event yearly and we know so many people and so many doctors and local connections,” Lisa says.
Jett Foundation President & CEO Eric Snyder brought this year’s theme, “Access Changes Lives,” to life by sharing how tailored support redefines what’s possible for Duchenne families. He also talked about what access means at Jett’s Place, our new wellness and retreat center project. Built specifically for the Duchenne community, this barrier-free sanctuary will open its doors as a warm, welcoming home away from home for all.
Dr. Stephen Chrzanowski, Assistant Professor of Neurology and Pediatrics and the new director of the Duchenne Muscular Dystrophy Program at the University of Massachusetts Chan Medical School, served as the luncheon’s keynote speaker.
Dr. Chrzanowski’s commitment to Duchenne began in childhood after watching his best friend’s older brother navigate the disease, a personal connection that led him to volunteer at MDA summer camps and ultimately dedicate his career to advancing Duchenne care and research. Drawing on this lifelong dedication during his speech, he explored the evolving landscape of Duchenne diagnoses and treatments, tackled current and future challenges, and offered his personal perspective on what true access means for individuals living with the disease.
“Access is so much more than medicine,” Dr. Chrzanowski says. “It’s the ability to participate in the world on your own terms.”
He highlighted the progress being made in Duchenne care and research, as well as the hope that continues to grow throughout the community.
“The access to hope is something that shines brightly more than ever before today,” he says.
The spirit of World Duchenne Awareness Day extended far beyond the luncheon. Across the country, families, and advocates rallied around this year’s theme, “Access Changes Lives.” Utilizing Jett Foundation’s virtual awareness campaign, social media toolkits, and 2026 Awareness Boxes, supporters everywhere found creative, meaningful ways to unite and amplify the message. More than 325 Awareness Boxes were requested by families filled with awareness items, including our beloved World Duchenne Awareness Day t-shirts, to educate in homes, neighborhoods, and offices everywhere!
Thank you to everyone who joined us at the luncheon, participated in our virtual campaign, purchased shirts and boxes, shared their stories, and helped raise vital awareness throughout the month. Every post, conversation, and donation helps make the Duchenne community stronger and reminds individuals and families that they are never alone.
A special thank you to this year’s luncheon sponsors. Your generosity helps bring our community together, creates opportunities for families to connect, and allows Jett Foundation to continue building spaces and experiences where individuals and families affected by Duchenne can feel supported, welcomed, and understood.
With a little more than a week left in September, let’s keep the momentum going. Continue sharing the message of “Access Changes Lives,” talking about Duchenne, and showing the world the strength of this incredible community.
To see more photos from the day, visit Jett Foundation’s Facebook page.
