As we turn the calendar to October, Muscular Dystrophy Awareness Month and World Duchenne Awareness Day (WDAD) have officially come to a close. September was filled with a flurry of energy and connection: personalized balloons shared on social media, creative fundraising campaigns, iconic landmarks illuminated in red, and people around the world gathering to honor the accomplishments and challenges of this determined and resilient community.

I’ve been working in the Duchenne muscular dystrophy field for many years, so the outpouring of support never surprises me — but always uplifts me. Throughout September I crisscrossed the country to participate in community gatherings from Orange County, CA to Philadelphia, PA, and from Charlotte, NC to Salt Lake City, UT. At each event I was reminded of the strength of the Duchenne community, from the highly active and engaged nonprofit organizations advocating for change to the family members proactively seeking information, knowledge and advice so they can best support their loved ones living with Duchenne.

WDAD, held each year on September 7, was especially powerful. This year’s theme, Family: The Heart of Care, was a chance for all of us to reflect on the critical role family plays in the lives of people affected by Duchenne. At a WDAD luncheon in Boston hosted by Jett Foundation, my colleagues Glenn Wrightington and Caroline Allen from our Patient Advocacy team as well as our President Matt Trudeau and Chief Operating Officer Erica Monaco were deeply moved by Matthew Stelmach’s keynote address. Matt, a Business Administrator for Advanced Energy Concepts who lives with Duchenne, spoke eloquently about the meaning of family in his life, from the unwavering support of his parents and siblings to the joy of meeting the love of his life, soon to be his wife.

Spending time with individuals and families affected by Duchenne reminds us of the hope and energy within the community. It also highlights the realities — families balancing multiple challenges every day, young men navigating significant obstacles, and caregivers relying on friends and family to build and sustain the strength they need to support their loved ones. Meeting individuals who are speaking out, pursuing their dreams, and persevering through both triumphs and struggles continues to shape how we understand and serve this community.

And yet, I know that awareness cannot be confined to a single month. Duchenne doesn’t pause just because September ends. As one dad recently reminded me, “Duchenne doesn’t take any days off.” At ITF, we understand that for families affected by this brutal disease, every day is Duchenne awareness day. This year, we set a goal of having 100% of our staff members engage with the Duchenne community. Some of us volunteered at athletic events like the Volt Hockey summer training camp at the University of Massachusetts campus in Newton, MA, some worked at summer camps around the country, others participated in Duchenne fundraising events in their own communities. One of the most meaningful days ITF had this year was when we dedicated an internal event to hear ITF colleagues share their experiences volunteering with the Duchenne community.

While I can never fully know what it feels like to live with Duchenne, I am committed to awareness in its truest sense: awareness of the pain and hardship this disease can bring, but also of the strength and potential this community holds. Most importantly, I remain acutely aware of our shared responsibility to keep working relentlessly, every single day, to drive change.

C-ITF-US-0003 10/2025