As the world celebrates International Women’s Day and Women’s History Month in March, we honor women who dedicate themselves to meaningful causes, creating a profound impact on the lives of those who need it most. Susan Finazzo of CureDuchenne is a perfect example. A nine-year resident of Coconut Grove, her commitment to advancing care for those who suffer from muscular dystrophy and supporting families affected by this neuromuscular disease has led her to join one of the most trailblazing teams in the field.
We spoke with Susan to learn more about the progress being made in Duchenne research, her role at CureDuchenne, and the importance of supporting those affected by the disease, especially women and mothers who are so often the driving force in these communities.
A Mission for a Cure
When Susan Finazzo’s two sons, Chase and Dylan, were diagnosed with Duchenne muscular dystrophy in 2020, her world changed forever. Duchenne is an aggressive disease that gradually robs boys of their mobility in adolescence and their lives in early adulthood. Faced with this devastating reality, Susan and her husband Chris knew they had to take immediate action, not just for their sons but for thousands of others living with Duchenne. Their search for answers led them to CureDuchenne, a nonprofit based in Newport Beach, Calif., dedicated to funding research for a cure.
As a passionate advocate and integral part of the CureDuchenne’ South Florida team, Finazzo channels her energy here in South Florida into raising awareness, supporting affected families, and ensuring that promising scientific advancements receive the funding they need. Her personal connection to the disease gives her work a powerful urgency, and she’s become a key voice in the fight against Duchenne.
Built by Mothers
CureDuchenne was founded by Debra and Paul Miller after their own son’s diagnosis left them with few options and even fewer answers. Refusing to accept the bleak prognosis, Debra turned her pain into action, rapidly creating an organization that has since become a leader in the fight against muscular dystrophy. Today, CureDuchenne funds cutting-edge research, advocates for better care, and provides resources to distraught families navigating this heartbreaking disease.
Susan works alongside other dedicated advocates, many of whom are parents fighting for their children’s futures themselves. “When CureDuchenne was first started, there weren’t many places for families to turn to,” she says. “Now, we’ve seen tremendous leaps in both medical advancements and the support systems available.” From the development of new treatments to the establishment of bilingual clinics, the progress made is a direct result of the tireless efforts of families and leaders within CureDuchenne.
Breakthroughs in Science Offer New Hope
“In recent years, a few scientific advancements have brought new hope to families affected by DMD,” says Finazzo. One of the most promising developments is exon skipping, a therapy that helps the body bypass genetic mutations to produce functional dystrophin, the protein necessary for muscle strength. Though not all Duchenne patients are eligible for exon-skipping treatments, as Susan notes “those who have experienced improved mobility and slower disease progression.”
Another major breakthrough is gene therapy, with the first FDA-approved treatment, Elevidys (developed by Sarepta Therapeutics), now on the market. This treatment uses a viral vector to deliver micro-dystrophin, a smaller version of the missing protein, helping to restore some muscle function.
Susan has witnessed firsthand how these advancements have transformed the landscape of Duchenne treatment. “Every time I attend a medical conference, there’s something new on the horizon,” she says. “The science is evolving so rapidly… it gives us hope that a cure is within reach.”
Supporting Families Beyond Research
While finding a cure remains the ultimate goal, CureDuchenne also prioritizes improving the daily lives of those affected by the disease and their families. The organization funds specialized clinics, provides grants for adaptive equipment, and offers certification programs for physical and occupational therapists to ensure they are well-trained in Duchenne-specific care.
One of the biggest challenges facing the community is the lack of adult doctors trained to treat Duchenne. Historically considered a pediatric disease due to its grim life expectancy, Duchenne patients are now living longer thanks to improved medical interventions. “We need to prepare for the future,” Susan explains. “More and more young men with Duchenne are reaching adulthood, and we have to ensure they receive the care they need!”
Another priority for CureDuchenne is accessibility. With many affected families being Spanish-speaking, the organization is working to expand bilingual clinics to ensure that language barriers don’t prevent children from receiving proper care. “It’s about meeting families where they are and making sure no one is left behind,” Susan says.
“Napa in Miami:” Raising Funds for a Cure
As part of their advocacy, Susan and her family have taken a leadership role in fundraising for CureDuchenne. Susan and Chris, now event chairs, are at the heart of “Napa in Miami,” an exclusive event bringing together some of Napa Valley, California’s most esteemed wine makers to serve their finest wines. This annual gathering attracts top business leaders, philanthropists, entrepreneurs, and wine connoisseurs, all united by a shared goal: to fund the search for a cure.
Taking place on April 5, 2025, Napa in Miami features a Grand Tasting, vintner-hosted dining tables, and a spectacular auction. All proceeds benefit CureDuchenne, ensuring that groundbreaking research continues and families receive the support they need.
“For us, this isn’t just an event, it’s personal,” Susan says. “We’re fighting for every child affected by Duchenne. We want them to have the chance to live full, meaningful lives.”
A Future Fueled by Hope
Despite the challenges, Susan remains steadfast in her mission. Through her work with CureDuchenne, she has harnessed the power of community, the impact of scientific progress, and the resilience of families while facing the unimaginable. “There is hope, and there is progress. With continued support, we believe a cure is possible.”
On this International Women’s Day, Susan’s journey stands as a testament to the strength and determination of women who refuse to accept the impossible. From advocating for her sons to working alongside CureDuchenne in the fight for a cure for muscular dystrophy, she embodies the resilience and leadership that drive real change. Her story is a reminder that when women lead with passion and purpose, they don’t just raise awareness, they move mountains.
ABOUT WOMEN’S HISTORY MONTH & INTERNATIONAL WOMEN’S DAY
Each year during March, International Women’s History Month gives us time to honor the achievements, contributions, and resilience of women throughout history who have shaped culture, politics, science, and society. It’s a reminder of the importance of amplifying women’s voices, preserving their stories, and continuing the push for a more inclusive and equitable future for all.
International Women’s Day, celebrated annually on March 8, honors the achievements of women worldwide while advocating for gender equality. Rooted in early 20th-century labor movements, it has grown into a global movement, inspiring progress across industries, communities, and cultures.
ABOUT CUREDUCHENNE
For information visit the CureDuchenne website or call 949- 872-2552. Also get information about Napa in Miami on April 5, 2025, featuring a Grand Tasting, vintner-hosted dining tables, and a spectacular auction. All proceeds benefit CureDuchenne, ensuring that groundbreaking research continues and families receive the support they need.
