JETT FOUNDATION INC

Empowering families. Fighting Duchenne.

Plymouth, MA   |  www.jettfoundation.org

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 info

2001

Executive Director

Eric Snyder

Main address

36 Cordage Park Circle, Suite 328 Suite 328

Plymouth, MA 02360 USA

Show more contact info

EIN

04-3563445

NTEE code info

Health Support Services (E60)

Patient Services - Entertainment, Recreation (E86)

Nerve, Muscle and Bone Diseases (G50)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

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.

Population(s) Served
People with diseases and illnesses
People with physical disabilities

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.

Population(s) Served
Families
People with diseases and illnesses

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.

Population(s) Served
Parents
People with diseases and illnesses

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our ultimate goal is to empower families as we fight together to realize a world without Duchenne.

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.

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.

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

JETT FOUNDATION INC
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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 directors
as of 10/11/2022
SOURCE: Self-reported by organization
Board chair

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

SOURCE: Self-reported; last updated 5/13/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

 

Sexual orientation

No data

Disability

No data