Today, Jett Foundation is announcing an important milestone in our continued growth: a transition at the Executive Director position. Over the next several months, our founding Executive Director, Christine McSherry, will be transitioning out of the role she has held since starting Jett Foundation. While she will remain involved on Jett Foundation’s Board of Directors, she will be shifting her primary focus to Casimir, a company she co-founded that captures and quantifies rare disease patient and caregiver perception to document disease progression and treatment benefit.
In 2001, Christine and Stephen McSherry started Jett Foundation after learning the devastating news that their then five-year-old son Jett had Duchenne muscular dystrophy. The McSherry family was determined to save Jett and the thousands of boys like him by establishing a foundation dedicated to funding Duchenne research to cure this deadly disease.
Since then, Jett Foundation’s efforts have raised over $16 million dollars for promising biomedical Duchenne research. But, as Christine watched her son grow, slowly losing abilities and independence, and as she built relationships with more and more families, she quickly discovered that there were significant gaps in care and services specific to families with Duchenne. Children were in need of more social development programs and parents needed more educational opportunities to learn about clinical trials, treatments, and how to be their children’s best advocates.
Jett Foundation’s focus began to pivot from a solely research-funding organization to a service-based nonprofit supporting families where they are at any stage in a diagnosis. Each new program of Jett Foundation was born of personal experience, resulting in the one-of-a-kind direct service programs and educational activities that we host today. Each program has a proven track record of influence and helps to meet the needs of affected families from across the nation, regardless of location, financial situation, or capabilities.
In April of 2016, Christine presented Jett Foundation’s Patient Centered Outcomes report at the FDA’s meeting of the Peripheral and Central Nervous System Drugs Advisory Committee. This led to a significant achievement for the foundation: playing a major role in the first FDA approval of a Duchenne therapy, Exondys 51. This approval required a herculean effort on the part of the Duchenne community, and it was largely successful in part due to the advocacy efforts of Christine and Jett Foundation.
“To have Exondys 51 reviewed took a lot out of me, physically and emotionally. But love and nurturing all will always be at the core of my being,” said Christine. “I see an opportunity where I can help other families not have to go through the same thing I went through. Casimir is my way of still serving underserved communities within rare disease and giving a voice to patients and caregivers.”
Christine’s priority is the caregiver and/or patient voice in drug development and ensuring that their input is captured, then allowing those impressions to influence the outcomes chosen for clinical trials. She stands firmly by the notion caregivers and patients themselves can contribute to the totality of the clinical data–and in rare disease–in a meaningful way.
“That’s what’s driving me right now. Demonstrating that parents are an intelligent resource. In some cases, that perspective can mean life or death… or even a few more months of life.”
After a national search spanning several months, Christine and our Board of Directors are thrilled to announce the organization’s incoming Executive Director, Eric Snyder. Eric comes to us with twelve years of nonprofit leadership experience and a breadth of knowledge in program development and strategic planning.
“When you give something attention it grows,” said Christine. “We need someone driven, focused, and willing to give intentional dedication to strategically grow and nurture our programs. Eric has an innate passion and energy to serve, which is something you can’t teach. His vast experience in diverse programs set him apart from other candidates. He shares the same compass as I do: his fulfillment is serving, so is mine.”
While this is a bittersweet moment for both our team and Christine, it also signals important progress toward the continued maturation of the organization. We’re excited for what’s to come and remain fully committed to Jett Foundation’s growth and continued impact on the Duchenne muscular dystrophy community.
“I am honored to join this wonderful foundation and to have an opportunity to support families on a national platform,” said Eric. “Jett Foundation is uniquely positioned to expand its reach and I look forward to working closely with the staff and board of directors to realize this potential. 2020 is going to be an exciting year of growth for us!”
Christine will continue to support Jett Foundation in a volunteer capacity as an active member of Jett Foundation’s Board of Directors and by participating in advocacy and policy meetings.
“My Casimir office is just down the hall from Jett Foundation and my door is always open.”
Media inquiries may be directed to Gabriella Costa at firstname.lastname@example.org.