JETT FOUNDATION INC
Empowering families. Fighting Duchenne.
Mission
Our mission at Jett Foundation is to extend and enrich the lives of individuals affected by Duchenne muscular dystrophy and other neuromuscular disorders. We fulfill this mission by partnering with individuals and families through empowering educational programming, transformational direct service experiences, and by accelerating development of life-changing treatments.
Ruling year
2001
Executive Director
Eric Snyder
Main address
36 Cordage Park Circle, Suite 328 Suite 328
Plymouth, MA 02360 USA
EIN
04-3563445
NTEE code
Health Support Services (E60)
Patient Services - Entertainment, Recreation (E86)
Nerve, Muscle and Bone Diseases (G50)
IRS filing requirement
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Communication
Programs and results
What we aim to solve
Duchenne muscular dystrophy (DMD) is the most common fatal pediatric disorder. The Duchenne gene is found on the X-chromosome and therefore affects mostly males; however in rare cases it affects females. It affects approximately 1 in every 3,500 live male births. There are approximately 15,000 patients diagnosed with Duchenne alive today in the United States. Duchenne has no cure. Duchenne is a progressive neuromuscular disorder that causes a loss of motor, pulmonary, and cardiac function, and ultimately, premature death. It is caused by a mutation in the gene that encodes for dystrophin, a lubricating protein supports muscle fiber strength. When dystrophin is missing in the body, muscle cells are easily damaged, which causes progressive muscle weakness in the entire body. Children with Duchenne are born seemingly healthy and decline over time, typically losing their ability to walk around the age of 12 and succumbing to the disease in their early to mid-twenties.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Jett Foundation Camp Promise
Camp Promise is a pillar of our programming and illustrates how important it is for youth with muscular dystrophy to make new friends and experience new opportunities in the community. Camp Promise is the only camp for kids and young adults with Duchenne and other neuromuscular disorders that does not have an age threshold. We serve about 100 campers per year and have a growing waitlist.
Camp Promise has all the typical aspects of summer camp, but the programs are specifically designed to meet the physical, emotional, and social needs of all of our campers, regardless of age and physical capability. Each camper gains independence, tangible skills, a sense of self, and learns to take pride in themselves while at Camp Promise. Campers are treated with dignity and respect, and are empowered to try activities they didn’t believe they could do before.
At Camp Promise, we emphasize “firsts”—first time away from home, first zip-lining experience, first time riding a bike, first time meeting a new friend, first date to prom. With each “first,” and with each year at camp, our campers gain independence, self-confidence, and the belief that they have the ability and the right to experience the best that life has to offer regardless of their physical capabilities. Critical to Camp Promise’s mission is providing campers with a fun AND safe experience, with a focus on medical care and support during their week of camp.
Jett Giving Fund
Jett Foundation established the Jett Giving Fund to assist families affected by Duchenne muscular dystrophy in purchasing unaffordable, but vital medical and accessibility equipment. Health insurance often won’t cover all specialized medical and accessibility equipment such as scooters, shower chairs, ramps, rotational beds and accessible vans; items needed when suffering from a progressive muscle-wasting disorder. Without these necessities, those with Duchenne struggle to participate in the kinds of activities that most people take for granted, such as getting to and from school, or going to the mall with friends.
Today, Jett Giving Fund currently offers families financial assistance through two main branches of support: the Accessible Vehicle Fund and the Emergency Fund. The Accessible Van Fund helps families obtain safe, accessible transportation. The Emergency Fund provides grants to families facing unexpected, emergency situations.
Educational Family Workshops
A traveling program that brings resources and information directly to families affected by Duchenne in many cities and towns each year. During these roundtable discussions, pharmaceutical companies in the Duchenne space, Duchenne expert clinicians and researchers, and Jett Foundation representatives, present on a myriad of topics including clinical trials, treatment and standard of care, physical therapy, genetics, and Jett Foundation direct service programs.
For the safety and wellbeing of our community amid the COVID-19 (coronavirus) outbreak, we have pivoted to virtual workshops until further notice. Our online Community Webinar Series is focused on ensuring that our Duchenne community is “better prepared” for those unexpected moments, challenging medical decisions, and difficult stages when on a Duchenne journey.
Where we work
External reviews
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
Our ultimate goal is to empower families as we fight together to realize a world without Duchenne.
What are the organization's key strategies for making this happen?
Our mission services this goal: to extend and enrich the lives of individuals affected by Duchenne muscular dystrophy and other neuromuscular disorders.
We fulfill this mission by partnering with individuals and families through empowering educational programming, transformational direct service experiences, and by accelerating development of life-changing treatments.
What are the organization's capabilities for doing this?
Empowerment
We believe that individuals and families impacted by Duchenne have the power to be their own best advocates. We’re here to help you get there.
Community
Our work is not possible without the support of our greater Duchenne community. We are in this together and can only tackle the challenges we face when united.
Family
We are here because family means everything to us. However you come to Jett Foundation, whether looking for assistance, attending an event, or offering your resources, you become part of our family.
Tenacity
Persistence and resolve are what got us here. We will not stop until each family we meet gets the support they need and the strength they need to fight Duchenne with us.
Integrity
We conduct our work honestly, transparently, and ethically. We hold ourselves to the highest of standards so that we can focus on those we serve.
What have they accomplished so far and what's next?
Through our direct service and educational programming, Jett Foundation is engaging with more families than ever
before. Throughout the year, we evaluate our programs by collecting relevant data and demographic information
to understand how we can best serve our community and meet their needs.
FAMILY WORKSHOPS: In 2019, 400 families attended workshops in seven different cities.
COMMUNITY AMBASSADOR PROGRAM: In 2019, we had 22 Ambassadors who engaged with over 275 families in 13 states. Ambassadors also help 9 Porch Nite support groups, which were attended by 96 caregivers.
DAN AND DMD: Jett Foundation has granted over 800 requests for this book in the past two years.
NEWLY DIAGNOSED CARE PACKAGES AND EDUCATION RESOURCES: In 2019, Jett Foundation expanded the reach of our educational resources to newly diagnosed families. Our Newly Diagnosed Care Packages include all of our existing materials, plus letters of support from our Community Ambassadors, and a full list of Certified Duchenne Care Centers. Over 500 newly diagnosed families have requested packets so far and will receive them this year.
JETT GIVING FUND: To date, Jett Foundation has received 125 requests for equipment from families across the country who are
struggling to access stair lifts, accessible vans, rotating beds etc. Jett Giving Fund has gifted 35 children and young people affected by Duchenne with medical equipment and items that improve their health and quality of life. Since 2017, the equipment gifted totals nearly $1,000,000. This includes 25 wheelchair accessible vans, 4 stair lifts, one rotation medical bed, and one scooter.
CAMP PROMISE: Nearly 600 happy campers have been served
through Camp Promise since its inception in 2009 with the help of 950 volunteers.
In 2020, we will serve nearly 150 campers in New Jersey, Colorado, Washington state, Ohio, and Arizona; host seven Duchenne Family Workshops around the country; and gift nearly $800,000 of accessible medical equipment to families in need through the Jett Giving Fund. Through our programming, patient-centered advocacy efforts, research projects, and education, we are reaching more families and young people than ever before
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
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JETT FOUNDATION INC
Board of directorsas of 10/11/2022
Ellen Hanson
Leo Robinson
Wells Fargo
Ellen Hanson
Boston Children's Hospital
Alfred Jackson
Portland Communications
Robert Stubbs
Careport Health
Christine McSherry
Casimir LLC
Colleen Pike
Lhasa OMS
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
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