Since its inception, Jett Foundation has been dedicated to empowering people and families affected by Duchenne muscular dystrophy. We believe in providing comprehensive support, from educational opportunities and transformative programming to ongoing care for every stage of a Duchenne journey. To achieve this mission, we rely on the support of partners who share our values and commitment to the community. One of our vital and long-standing partners is NS Pharma.
Our partnership with NS Pharma began in 2017 when the company was preparing to launch one of the first exon-skipping treatments for Duchenne. NS Pharma was drawn to Jett Foundation’s unique approach to community engagement and our efforts to address unmet needs, which closely aligns with their corporate philosophy.
“At NS Pharma, our mission is to advance revolutionary rare disease therapies that address unmet needs and help people live healthier, happier lives,” says the company’s President, Yukiteru Sugiyama, PhD. “Our focus is on improving quality of life for people living with debilitating genetic disorders, such as Duchenne muscular dystrophy, by expanding novel treatment options and addressing the most pressing needs of the communities we serve.
This shared dedication is the foundation of our partnership. NS Pharma’s team recognized that to provide truly meaningful support, they needed to connect directly with patients and families. Jett Foundation’s programs, from local workshops to developmental opportunities like Camp Promise, provided the perfect platform for this vital connection.
“Jett’s approach to community engagement is unique in the way you focus on addressing gaps in support services that will be most impactful for both patients and families. Dr. Sugiyama explained. “Our partnership with Jett Foundation has been vital to our ability to connect with the Duchenne community and truly understand the all-consuming impact this disease has on families.”
This understanding, they say, allows them to make strategic decisions on where their efforts will be most impactful. Beyond corporate contributions, NS Pharma’s internal culture is deeply tied to its community involvement. Their team members actively participate in events like the Jett National Challenge and World Duchenne Awareness Day, fostering a personal connection to the Duchenne community.
“For our employees, these events foster a deep, personal connection to the DMD community and provide meaning for their individual contributions to our collective mission,” says Dr. Sugiyama.
This personal connection was powerfully demonstrated when members of NS Pharma’s Patient Services team visited Camp Promise. They witnessed firsthand the transformative growth experience for the campers and the joy and relief the program offers to families. This experience, along with their support of life-changing services like transportation and van programming, has been especially impactful. “This was my first year attending Camp Promise and it was so heartwarming to experience the sense of community this event offers – seeing campers light up with joy, confidence and friendship truly reinforced the importance of NS Pharma’s support of Jett Foundation and the Duchenne community at large,” said Judy Cohen, Associate Director of Patient Services.
Looking to the future, NS Pharma remains hopeful for continued progress in Duchenne research and care. “Significant progress has been made in recent years in providing patients and families with greater treatment options, and we hope to see that momentum continue,” says Dr. Sugiyama. “As the life expectancy of these boys continues to increase, it is our obligation to understand their developing needs and a privilege to meet them where they are. We are hopeful that our own R&D efforts, including our in-house pipeline and commercial partnerships, will continue to provide additional therapies and meaningful contributions to the health of the DMD community.
Jett Foundation is proud to partner with companies like NS Pharma, whose dedication and hands-on involvement are instrumental in advancing our shared mission. We look forward to continuing to work together to support the Duchenne community, provide innovative care, and cultivate a hopeful future.
To become a mission-supporting partner, like NS Pharma, please email Maura Carroll at [email protected] to get started.
