Jett Foundation empowers people and families impacted by Duchenne muscular dystrophy through the development of transformative programming, educational opportunities, and ongoing support for every stage of a Duchenne journey.
2024 HIGHLIGHTS AT A GLANCE
Served more than 4,000 individuals (35% more than in 2023).
261 campers participated in Camp Promise programs, including 162 young adults who are 18+.
877 individuals/families registered for our Family Workshops and Community Webinars, with an additional 1,500 views on YouTube.
200+ applications were received for our Jett Giving Fund Accessible Vehicle Fund, Emergency Fund, and Equipment Fund. 120 grants and equipment were awarded.
2024 Engagements
200 Welcome Packets sent
60 families recieved emergency grants
29 Ambassadors
20 families recieved a equipment assistance grant
15 families recieved a van
7 Camp locations
4 Workshop locations
4 Porch Nite retreats
2024 Engagements
200 Welcome Packets sent
60 families recieved emergency grants
29 Ambassadors
20 families recieved a equipment assistance grant
15 families recieved a van
7 Camp locations
4 Workshop locations
4 Porch Nite retreats
250+ individuals (from 42 different states) requested our Welcome Packets which provide valuable information and resources. Now available in Spanish!
456 caregivers registered for our in-person or virtual support groups, including Porch Nite and Carrier Conversations.
250 participants in our Team Jett and Signature Events to raise funds and awareness for our programs and the people we serve.
147,000+ website page views and 280,000+ reach across social media platforms in 2024.
Community Collaborations
By joining forces with other Duchenne organizations, we were able to provide three more accessible vehicles, and we’re incredibly proud of this community effort.
Similarly, the Jett Giving Fund brought much-needed relief to the Dinh family of Dracut, Massachusetts (pictured on cover).
Kristina and Si Dinh faced the difficult reality of their sons, Steven (15) and Simon (11), being diagnosed with Duchenne muscular dystrophy. With their sons relying on power wheelchairs and unable to move independently, the simple act of leaving their home became a daunting task. Lifting and carrying Steven and Simon to their vehicle posed a significant safety risk, especially with their young son, Dennis, also needing care.
“We couldn’t safely get the boys to appointments, school, tutoring, and daily activities,” shares Kristina and Si. “The boys deserve to see new places and get the care they need.”
By connecting with Jett Foundation and participating in the Accessible Vehicle Fund, the Dinh family found a path to greater freedom. After successfully fundraising half the cost of their vehicle, Jett Foundation, with the support of sponsors, covered the remaining expenses. The Dinh family celebrated the arrival of their new accessible van surrounded by love and support. The day was filled with joy, happy photos, and heartfelt gratitude, marking the end of years of transportation struggles.
“In the midst of our struggles, we found kindness,” Kristina says. “When we were accepted into the Accessible Vehicle Fund, we weren’t just offered support; we were offered freedom. At the time, a safe and accessible van was something we could only dream of. Now, our boys can safely go to school, the park, and appointments without struggle.”
2) Emergency Fund
Provides critical financial assistance to families facing unforeseen challenges, such as unexpected medical expenses or home modifications.
• In 2024, we granted over 80 grants to families from 21 different states in the amount over $100,000 in the following areas:
3) Equipment Fund
Other: these were for car repairs, childcare, and hurricane/weather-related emergencies
Supports the acquisition of essential equipment, such as specialized wheelchairs, communication devices, and adaptive technology, to enhance quality of life and independence.
• In the first year of this program, Jett Foundation gifted 15 grants to families in the amount of $30,000
› Types of assistance include: Hoyer lifts, travel chairs, respiratory equipment, ramps, and assistive technology
JETT FOUNDATION’S CAMP
PROMISE: A Summer of Joy and Connection for Individuals with Neuromuscular Disorders
Jett Foundation’s Camp Promise, a summer camp program for individuals with neuromuscular disorders, successfully completed its 2024 tour with seven exciting locations across the United States, in addition to a virtual weekend. This year, the program expanded its reach with the addition of two new stops: Southern California and South Carolina, providing more opportunities for young people and adults to experience the magic of Camp Promise.
Camp Promise provides a valuable opportunity for individuals with Duchenne and other neuromuscular disorders to connect with peers, build confidence, and create lasting memories. The program fosters a supportive community and empowers campers to explore their abilities and live life to the fullest.
Campers participate in traditional summer camp activities and build confidence through unique programming that encourages them to step out of their comfort zone and engage with others who live with neuromuscular diseases. Camp Promise offers a wide range of activities, including accessible ropes courses, ziplining, archery, swimming, arts and crafts, games, music, and more. Campers engage in themed activities, build friendships, and participate in community-building events, creating lasting memories.
Jett Foundation is committed to empowering families and individuals affected by Duchenne muscular dystrophy through comprehensive community education programs.
Jett Foundation provided ongoing support through two key programs in 2024: Meet and Greet and Welcome Packet programs.
MEET AND GREET PROGRAM: Building Connections Across Communities
Jett’s Meet and Greet program utilizes one-hour Zoom meetings to connect with clinics, schools, DSS agencies, and others, particularly those in rural and southern states where diagnosis delays are prevalent. The goal is to share Jett Foundation’s resources and educational materials with both clinicians and patients. In 2024, Jett Foundation met with 18 clinics, schools, DSS agencies, and others that collectively serve over 500 patients annually. Participating institutions included, but were not limited to:
• University of Alabama, Birmingham, AL
• Jones County Department of Social Services, Trenton, NC
• Saint Anthony’s Group, MDA Care Center, Saint Petersburg, FL
• John’s Hopkins Children’s Hospital, Saint Petersburg, FL
• Nonotuck Resource Associates, Inc. Plymouth, MA
• Charlotte-Mecklenburg Schools, Charlotte, NC
• Nation Wide Children’s Hospital, Columbus, OH
• Akron Children’s Hospital, Akron, OH
• Hackensack Meridien Health, Hackensack, NJ
• Norton Health, Louisville, KY
Webinars
Jett Foundation’s commitment to supporting the Duchenne muscular dystrophy community extends far beyond in-person events. The organization’s Community Webinar Series provides an accessible and convenient way to bring vital educational resources directly into the homes of families and individuals affected by Duchenne, no matter where they live.
These webinars offer a unique opportunity for participants to connect with and learn from leading experts in a variety of crucial areas. From practical tips for daily care to updates on cutting-edge technology and treatments, the series covers a wide range of topics relevant to the Duchenne community. Participants can not only hear from experts but also engage in live Q&A sessions, ensuring their specific questions and concerns are addressed. The impact and value of the Community Webinar Series are clearly reflected in participant feedback:
• 96% of participants indicated they were “very likely” to recommend the webinar to someone impacted by Duchenne or seeking information on the topic.
• 100% of participants expressed they were “very likely” to attend another Community Webinar.
These overwhelmingly positive responses underscore the effectiveness of the series in providing valuable and accessible education to the Duchenne community. Jett Foundation’s Community Webinar Series serves as a vital resource, empowering families and individuals with the knowledge they need to navigate the complexities of Duchenne and live their fullest lives. By offering these educational opportunities online, Jett Foundation ensures that geographical limitations do not become barriers to accessing critical information and support.
In 2024, Jett Foundation hosted 22 webinars, demonstrating the program’s significant reach and impact. Over 400 individuals registered for these webinars, representing an impressive 42 states within the United States and 11 countries across the globe: Poland, India, Romania, Switzerland, Sweden, Australia, Canada, Korea, Malaysia, England, and Egypt. This diverse participation highlights the global need for Duchenne education and the accessibility of Jett Foundation’s resources.
The impact of these webinars extended beyond live attendance. An additional 1,500 views of recorded webinars were logged through Jett Foundation’s website and YouTube page, demonstrating the enduring value and accessibility of this educational content. Facebook Live streams consistently increased webinar viewership by an average of 300 views per event. This on-demand access ensures that individuals can benefit from the expertise shared in the webinars at their convenience.
2024 WEBINAR REGISTRANTS
COMMUNITY AMBASSADORS: A Vital Force
Our Community Ambassadors are invaluable members of the Jett Foundation family. Often the first point of contact for newly diagnosed families, these dedicated volunteers play a crucial role in welcoming families into the community through regional meetups and virtual panel discussions. In 2024, 31 volunteer Ambassadors from 23 states generously shared their time and personal experiences with over 750 members of our community.
Key contributions from our Ambassadors this year include:
• Industry Advocacy: Connecting with industry partners to share the valuable perspectives of patients and families.
• Community Feedback: Regularly meeting with Jett Foundation staff to provide valuable insights and feedback gathered within the community.
• Community Engagement: Actively sharing Jett Foundation announcements, industry news, events, and webinars within their networks.
“Jett Foundation is a family-friendly networking resource. It provides social connections/educational opportunities for caregivers/ families. Jett reduces stress with financial support to DMD families. They focus on day-to-day functions and let families know they have a Jett community available to them in many ways.”
Supporting Families Through Community
Jett Foundation’s support groups were born from the recognition of the critical need for connection and support within the Duchenne community. Recognizing the isolation often felt by parents and caregivers, these groups provide a safe and understanding space for families to connect and find solace in shared experiences.
Our support groups have expanded to include valuable resources like Carrier Conversations, specifically designed to support women who are carriers of the Duchenne mutation. These conversations provide a platform for carriers to discuss their fears, hopes, and concerns, while learning how to care for their own health and navigate the emotional and practical challenges associated with being a carrier.
• We hosted 10 virtual Carrier Connections meetings, which drew a total of 142 registrants.
• Hosted 14 virtual Porch Nights which drew a total of 273 registrants
30 Ambassadors from 21 states have a combined network of 750 families impacted by Duchenne
STRENGTHENING FAMILY RESOURCES:
Jett Foundation Hires Social Worker
Jett Foundation welcomed its first full-time social worker this year, Jessica Campbell, to better serve families impacted by Duchenne muscular dystrophy. Jessica, a mother of two with a son living with Duchenne, brings both professional expertise and personal understanding to her new role. She dedicates her time to helping families navigate the complexities of Duchenne by connecting them with crucial resources, providing emotional support, and being readily available on a full-time basis. This significant step underscores Jett Foundation’s commitment to holistic family support, ensuring families have the guidance and assistance they need throughout their journey.
Jessica Campbell, MSW (left) at a Jett Foundation Family Workshop
Jessica with her son, Javon
Jett Foundation Celebrates Awareness with Community Events
Jett Foundation marked two significant awareness days in 2024 with impactful events that brought together the Duchenne community and beyond.
Thank you to our donors
Our donors make it possible for Jett Foundation to empower families and fight Duchenne. Thank you to the people and organizations who contributed $1,000 or greater during FY24 through financial gifts, in-kind donations, or peer-to-peer fundraising.
American Plumbing and Heating
Anderson Fuel
Arizona Community Foundation
James Armitstead
Auburn Construction
Austin’s Hope
Avidity Biosciences
Beth Baird
Ball Family
Stephanie Bandzak
Barbara Bresnan Memorial Foundation
Barkowskie Family
Barry Carroll Foundation for Lodge 25 IN
Bay State Federal Savings Charitable Foundation
Bergen Count Sheriff’s Department
Beth Israel Deaconess Hospital
Biomarin
Bob’s Discount Furniture Charitable Foundation, Inc.
Nicole Borden
Marshall & Mary Brondum Special Assistance Foundation
James Bruce
John Buckley
Gwendolyn Busch
Michael Busch
James Bustamante and Steph Howie
John Calhoun
Allison and Bob Caputo
Cardinal Health
CHAMPIONING OUR MISSION: Cure Dale’s Duchenne
Cure Dale’s Duchenne demonstrates a profound commitment to supporting families facing the challenges of Duchenne muscular dystrophy. Having personally navigated Duchenne with Dale, their son, they offer meaningful assistance rooted in deep understanding and compassion. In 2017, Cure Dale’s Duchenne became a vital partner of the Jett Giving Fund, providing crucial support to our Accessible Vehicle Fund. With a spirit of humility and a genuine desire to positively impact the lives of families impacted by Duchenne, their annual
support has been instrumental in empowering families with the freedom and independence that accessible vehicles provide.
As Lelia Ginder, co-founder of Cure Dale’s Duchenne, explains, “We were deeply moved by the number of families who struggled to provide the necessary support for their children. Navigating the challenges of Duchenne is incredibly difficult, and the financial burden of essential equipment like accessible vehicles can be overwhelming.”
Roger and Maura Carroll
Catalyst Pharmaceuticals
Scott Chatterton
Chinese Bible Church of Greater Boston
Scott Clifford
Coastal Bend Community Foundation
Amanda Coleman
Stephanie Colorado
Lora Cooley
John Cox
Crane U Inc
Crossfit Mob
Joseph Davis
Deen Day Sanders
Amanda Dehart
Sheila and Tony Dicioccio
Joanne Donovan
Dr. Christiane Rougee Memorial Fund
Dr. Squatch
Kevin Ducie
Dyne Therapeutics
Edgewise Therapeutics
Emilson Family Foundation
Entrada Therapeutics
Family Nail Inc
Jim Ferguson
Emily Fields
Finn’s Friends
Firefighters of PBC
Firefighters on a Mission Focus
Rick Ginder, co-founder of Cure Dale’s Duchenne, echoes this sentiment: ‘Jett Foundation has a well-established reputation for transparency and genuine support within our community. We trust in their mission and believe that by partnering with Jett, we can maximize our impact and ensure that families have access to the critical resources they need.’ By choosing to support Jett’s existing programs, Cure Dale’s Duchenne demonstrates a commitment to efficiency and a deep understanding of the urgent needs within our community.”
