ARTICLE
Plymouth, MA - January 23, 2020 - Jett Foundation, a non-profit organization dedicated to raising awareness and funds for Duchenne muscular dystrophy (DMD), is announcing an important milestone in the organization’s continued growth: a transition at the Executive Director position. Over the next several months, founding Executive Director, Christine McSherry, will be transitioning out of the role she has held since starting Jett Foundation. She will be shifting her 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. Every new program of Jett Foundation was born of personal experience, resulting in the one-of-a-kind direct service programs and educational activities hosted 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.” After a national search spanning several months, Christine and Jett Foundation’s Board of Directors are thrilled to announce the organization’s incoming Executive Director, Eric Snyder. Eric comes to the foundation 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 the Jett Foundation team and Christine, it also signals important progress toward the continued maturation of the organization. The team is excited for what’s to come and remains 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. About Duchenne muscular dystrophy Diagnosed during childhood, Duchenne is a progressive neuromuscular disorder that causes a loss of motor, pulmonary, and cardiac function, and premature death. It affects every one in 3,500 live male births and some females. Duchenne has no cure. Children with Duchenne are born seemingly healthy and decline over time, usually losing their ability to walk around the age of 12 and succumbing to the disease in their early to mid-twenties. About Jett Foundation Since 2001, Jett Foundation, located in Plymouth, Mass., has worked to find treatments and a cure for Duchenne muscular dystrophy while improving and enriching the lives of those impacted. Jett Foundation is a registered charity with 501(c)(3) status from the IRS; all donations are tax deductible. www.jettfoundation.org. Media Contact for Jett Foundation Gabriella Costa, gabriella@jettfoundation.org, 781-585-5566
Plymouth, MA - January 23, 2020 - Jett Foundation, a non-profit organization dedicated to raising awareness and funds for Duchenne muscular dystrophy (DMD), is announcing an important milestone in the organization’s continued growth: a transition at the Executive Director position. Over the next several months, founding Executive Director, Christine McSherry, will be transitioning out of the role she has held since starting Jett Foundation. She will be shifting her 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. Every new program of Jett Foundation was born of personal experience, resulting in the one-of-a-kind direct service programs and educational activities hosted 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.”
After a national search spanning several months, Christine and Jett Foundation’s Board of Directors are thrilled to announce the organization’s incoming Executive Director, Eric Snyder. Eric comes to the foundation 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 the Jett Foundation team and Christine, it also signals important progress toward the continued maturation of the organization. The team is excited for what’s to come and remains 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.
About Duchenne muscular dystrophy Diagnosed during childhood, Duchenne is a progressive neuromuscular disorder that causes a loss of motor, pulmonary, and cardiac function, and premature death. It affects every one in 3,500 live male births and some females. Duchenne has no cure. Children with Duchenne are born seemingly healthy and decline over time, usually losing their ability to walk around the age of 12 and succumbing to the disease in their early to mid-twenties.
About Jett Foundation Since 2001, Jett Foundation, located in Plymouth, Mass., has worked to find treatments and a cure for Duchenne muscular dystrophy while improving and enriching the lives of those impacted. Jett Foundation is a registered charity with 501(c)(3) status from the IRS; all donations are tax deductible. www.jettfoundation.org.
Media Contact for Jett Foundation Gabriella Costa, gabriella@jettfoundation.org, 781-585-5566