Sarepta has announced the launch of SareptaCircle, a program to help highlight the experiences of people affected by rare disease and to shine a light on the impact these conditions can have on individuals and families.
In addition to resources and support, people and families impacted by Duchenne will share their experiences and provide insights to help others facing a diagnosis
CAMBRIDGE, Mass., Feb. 22, 2022 (GLOBE NEWSWIRE) — Sarepta Therapeutics, Inc. (NASDAQ: SRPT), the leader in precision genetic medicine for rare diseases, today announced the launch of SareptaCircle, a program to help highlight the experiences of people affected by rare disease and to shine a light on the impact these conditions can have on individuals and families. Available at http://www.sareptacircle.com, the program provides educational resources and support while offering an authentic view of daily life with a rare disease—from dealing with the emotions of diagnosis to navigating the challenges of life at home, in school, and in the community.
“The impacts of a rare disease extend beyond the individual living with the disease, affecting parents, siblings, family finances, job decisions and much more,” said Dallan Murray, senior vice president, chief customer officer for Sarepta Therapeutics. “With SareptaCircle, the voices of those affected by rare diseases have a platform to share their experiences and help others facing a diagnosis, starting with the Duchenne muscular dystrophy community.”
The SareptaCircle program will initially share the stories of four people connected to the Duchenne community: Joshua, living with Duchenne, and Diane, his mother; JB, mother to a son with Duchenne; and Katie, sister to an individual living with Duchenne.
“SareptaCircle presents a unique opportunity for those of us affected by Duchenne to share our insights into topics that are critical for families to thrive, topics that may initially be overlooked or put on the back burner,” said Katie Penrod, whose younger brother was diagnosed with Duchenne 14 years ago. “My hope is that families living with Duchenne can glean diverse perspectives and resources from our experience, and know they are not alone as they navigate the diagnosis and different stages of the disease.”
“As a mother of a son living with Duchenne, I feel a duty to serve the community in as many ways as I can. Advocacy, clinical trials, building relationships, starting conversations, and raising necessary funds for research are all ways I have contributed in the past,” said JB Crowley, mother of a son with Duchenne. “Coming down the trail behind us is a new generation of boys with this diagnosis and parents who have many of the same questions that I had. With SareptaCircle, I am looking to take my personal experience as a wife, mother, and caregiver to another level of engagement and reach even more of the community that I dearly love and lighten and brighten their outlook on a life with Duchenne.”
SareptaCircle resources are currently available as part of a broader update to Duchenne.com, Sarepta’s online destination for news, educational resources, and research information for the Duchenne community. SareptaCircle complements existing resources available to the community from advocacy organizations and other groups. In an effort to serve the broader Duchenne community, SareptaCircle and Duchenne.com content is available in English and Spanish.
Duchenne is a rare genetic disease that affects approximately one in 3,500 to 5,000 males born worldwide. It predominantly affects males and, in rare cases, can affect females. Duchenne causes the muscles in the body to become weak and damaged over time and is eventually fatal. Due to the nature of the disease, individuals with Duchenne require long-term caregiving that begins at an early age with physical therapy and increases over time. Most individuals with Duchenne use a wheelchair by the time they are 12, and, during adolescence, heart and breathing muscles weaken, leading to serious, life-threatening complications.
About Sarepta Therapeutics
Sarepta is on an urgent mission: engineer precision genetic medicine for rare diseases that devastate lives and cut futures short. We hold leadership positions in Duchenne muscular dystrophy (DMD) and limb-girdle muscular dystrophies (LGMDs), and we currently have more than 40 programs in various stages of development. Our vast pipeline is driven by our multi-platform Precision Genetic Medicine Engine in gene therapy, RNA and gene editing. For more information, please visit www.sarepta.com or follow us on Twitter, LinkedIn, Instagram and Facebook.
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Source: Sarepta Therapeutics, Inc.
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