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CALEB, living with Duchenne.

Duchenne Wisdom: Finding a Way Forward

Inspiration for the Community, by the Community

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Sarepta's commitment to the Duchenne community extends beyond developing innovative therapies. Our goal is to understand the impact of the disease on patients and caregivers so we can help support the entire spectrum of Duchenne muscular dystrophy. As we get to know more members of the Duchenne community, we continue to be inspired by the young men who are coping with their condition and making the decision to continue to live a full life. They are learning to drive, going to college, and working. These individuals, along with the caregivers and friends who support them, have inspired us to create SareptaCircle, a program dedicated to telling the stories of all those impacted by Duchenne.

SareptaCircle Engagers are individuals living with Duchenne or the family members who help care for them. Our goal is to tell their stories and to offer an authentic view of life with Duchenne—from dealing with the emotions of diagnosis to navigating the challenges of life at home, in school, and in the community.

Meet the SareptaCircle Engagers

SareptaCircle Engagers Joshua, Diane, Katie, JB, and Nate offer an honest, unfiltered perspective on Duchenne based on personal experience.

Meet JB

JB speaks honestly about her family’s experiences living with Duchenne and shares how, despite the challenges, they have chosen joy and are determined to do whatever is necessary to help Charlie lead a full and happy life.

Meet Katie

As the sibling of someone who has Duchenne, Katie provides a unique and honest perspective on what it has felt like to grow up with a brother who has a progressive, muscle-weakening condition, how she has helped care for him, and why she believes it’s important to be a strong advocate.

Meet Joshua and Diane

College student, Joshua, has a passion for music, and his mother, Diane, has given him the creative space to do what he loves.  Watch this mother and son duo share insights into how they’ve managed both the obstacles and triumphs of living with Duchenne and autism. 

Support and Independence 

See the ingenious adaptations that are helping people with Duchenne achieve greater independence.

/living-with-duchenne/support-and-independence

Education

Find out about steps and strategies that can make a difference at every level of education. 

/living-with-duchenne/education

Mental Health

Learn about steps that can help foster emotional well-being not only for people with Duchenne, but for their families as well. 

/living-with-duchenne/mental-health

SareptaCircle Engager Videos

We’ve compiled an entire collection of videos from SareptaCircle Engagers that tell honest stories of hope and adaptation from the perspective of people and families who truly know what it means to live with Duchenne. 

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