Program Overview

Ryan Michael, living with Duchenne and taking DUVYZAT

Ryan Michael is 17 years old and was diagnosed with Duchenne nearly a decade ago. After joining the clinical trial in 2019, he began treatment with DUVYZAT. Today, he continues to take DUVYZAT alongside steroids and heart medication, feeling positive about his care over the past 6 years.

As an ambassador for the Muscular Dystrophy Association^® and active member in its Let’s Play gaming community, Ryan Michael is known for his humor, resilience, and ability to make friends with everyone he meets. He serves as his high school basketball team’s manager, is working toward becoming an Eagle Scout, and takes pride in his strong grades—especially in math.

He credits his doctor’s kindness and encouragement with making a lasting impact on his journey. Ryan Michael’s determination and infectious spirit inspire others in the Duchenne community to know they are not alone. 

Susan, caregiver to Ryan Michael

Susan is a devoted mother and caregiver to her son, Ryan Michael, who was diagnosed with Duchenne when he was 8 years old. After advocating for his participation in a clinical trial, she has continued supporting him since he started treatment with DUVYZAT in 2019.

Over the years, she has become a trusted resource for other families navigating treatment and daily life with Duchenne. Susan draws strength from Ryan Michael’s determination to learn, explore, and connect with others—qualities that have helped her step out of her own introverted shell.

As his needs have evolved, she has grown stronger too, supporting him physically and emotionally through the challenges of Duchenne. Together, they stay active in the Muscular Dystrophy Association^® Let’s Play online gaming community, where they connect with other families, share encouragement, and find understanding.

Naythan, living with Duchenne and taking DUVYZAT

Naythan is 17 years old and was diagnosed with Duchenne at age 3. He began treatment with DUVYZAT in 2016 after participating in the clinical trial with his younger brother, Ethan.

Naythan has shown courage and determination while navigating the challenges of living with Duchenne. In his free time, he enjoys hanging out with his friends and family. Naythan’s journey reflects his strength beyond his physical abilities as his hopeful outlook uplifts his siblings and everyone around him.

Ethan, living with Duchenne and taking DUVYZAT

Ethan is 15 years old and was diagnosed with Duchenne at 18 months old. He began treatment with DUVYZAT in 2016 after participating in the clinical trial with his older brother, Naythan.

Known for his love of science and quick curiosity, Ethan excels in his homeschool studies and tackles challenges with a positive spirit. Despite mobility limitations, he continues to surprise his family with his perseverance, like the time he climbed a mountain in Peru on his hands and knees. Ethan has grown into a determined and resilient young man. His strength, humor, and optimism inspire everyone around him.

Carlos and Gisela, caregivers to Naythan and Ethan

Carlos and Gisela are dedicated parents and caregivers to their sons, who were diagnosed with Duchenne at just 18 months and 3 years old. Since 2016, their boys have been treated with DUVYZAT, corticosteroids, and other medications.

Gisela’s journey with Duchenne began at a young age when her cousin and brothers were diagnosed. That early experience shaped the strength and resilience she carries today as a mother. Alongside her, Carlos draws on his background as a registered nurse and healthcare executive, serving as a tireless advocate for their children.

Together, they’ve navigated clinical trials, insurance hurdles, and the daily realities of caregiving, always working to ensure their children receive the best possible care. Through their unwavering positivity and determination, Carlos and Gisela show their children that joy can outshine even life’s toughest challenges.

Conner, living with Duchenne and taking DUVYZAT

Conner is a 14 year old living with the diagnosis of Duchenne since he was 4. For much of that time, his treatment options were limited to steroids—until he discovered DUVYZAT in 2024, bringing new hope to him and his family.

Every day, Conner faces the challenges of Duchenne with remarkable strength and determination. He uses an electric scooter to get around, but it’s his adventurous spirit that truly moves him forward. A huge sports fan, Conner has set an ambitious goal: to visit all 30 Major League Baseball (MLB) stadiums across the country—he’s already made it to 16!

Although he can’t always join in on school sports, Conner finds joy in cooking with his parents and playing chess and video games with his friends. His story is a powerful reminder that life will throw curveballs—it’s how we step up to the plate that matters most.

Jessica, caregiver to Conner

Jessica is a teacher, devoted mother, and caregiver to her son, Conner. He was diagnosed with Duchenne at just 4 years old.

Since starting DUVYZAT, Conner’s doctors have continued to evaluate his progress. Jessica partners closely with them to ensure her son stays on treatment. Beyond helping to manage Duchenne, Jessica encourages Conner’s dream of visiting all 30 MLB stadiums. She describes him as an all-around American teen—he loves football, eating wings, and playing football video games. As a family, Conner and his parents love to cook together and invent exciting new recipes.

Jessica is by Conner’s side through the ups and downs of daily life. Although Jessica sees how strong Conner can be, she’s also there to support him in the more difficult moments. Conner cannot participate in physical activities, including sports, and sometimes feels embarrassed when using his electric scooter. Jessica knows these moments can be tough, and they work through them together. She recognizes the challenges of navigating a world that doesn’t always understand disability, and she hopes their story will raise awareness of Duchenne so that other kids like Conner can feel seen and understood. 

Grant, living with Duchenne and taking DUVYZAT

Grant, 14, was diagnosed with Duchenne in 2016. He has had treatment with DUVYZAT since early 2025 and currently takes it alongside corticosteroids and other medications.

Affectionately known as “Saint Grant” by his family, Grant is the embodiment of empathetic kindness and courage. He fills his free time playing video games, learning about animals, and exploring stories from history—always bringing warmth and curiosity to everything he does.

Leslie, caregiver to Grant

Leslie is mother and caregiver to her son, Grant, who was diagnosed with Duchenne when he was 5 years old.

Since Grant began treatment with DUVYZAT in 2025, Leslie has been by his side every step of the way. After building a career as an attorney and working as a state prosecutor, she chose to become a stay-at-home mom and caregiver—bringing her fierce determination and advocacy skills to her family’s journey with Duchenne.

Leslie has faced the challenges of navigating insurance and accessing essential treatments firsthand, ensuring Grant receives the care and resources he needs. Beyond her own family, Leslie has made a difference in the broader Duchenne community, working with advocacy groups and connecting families with vital support and resources.

Joe, living with Duchenne and taking DUVYZAT

Joe is an 8 year old with Duchenne. He was diagnosed at age 5 and began treatment with DUVYZAT in 2024. He currently takes DUVYZAT alongside a novel corticosteroid and an ACE inhibitor. Known for his empathy, resilience, and positivity, Joe’s mom, Rosalia, says he is “the most happy-go-lucky kid.” Joe is in the third grade and enjoys gaming and spending time with his family.

Rosalia and Richard, caregivers to Joe

Rosalia and Richard are devoted parents and caregivers to their son, Joe. They learned about DUVYZAT from another family whose son was on treatment.

Rosalia has become an advocate for not only her son, but families living with Duchenne across the nation. She has helped pass legislation in her state that ensures every newborn is screened for Duchenne. Today, she is working to pass that same legislation at the federal level. Through her advocacy, she continues to raise awareness, connect families with resources, and inspire hope for the Duchenne community.

Richard supports Joe both physically and emotionally—carrying Joe and lifting his spirits when needed. For Richard, being a steady source of strength is just as important as maintaining a hopeful outlook for the future.

Together, Rosalia and Richard balance advocacy and everyday caregiving as a unit. For them, it’s important to show Joe that while Duchenne is a part of their lives, it does not define their lives or overshadow the joy their family shares.