Jett Foundation 2024 Impact Report

Empowering families.

Fighting Duchenne.

J E T T F O U N DAT I O N ’ S

IMPACT Report

F Y 24

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 Engagements 200 Welcome Packets sent 60 families recieved emergency grants 29 Ambassadors

2024 Engagements 200 Welcome Packets sent 60 families recieved emergency grants 29 Ambassadors

20 families recieved a equipment assistance grant

20 families recieved a equipment assistance grant 15 families recieved a van 7 Camp locations

4 Workshop locations 4 Porch Nite retreats

15 families recieved a van

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.

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.

jettfoundation.org

Letter from

the Executive Director

Dear friends, I am filled with immense pride and gratitude as I reflect on the incredible strides Jett Foundation has made in our fight against Duchenne muscular dystrophy and in our unwavering support of the families we served this year. 2024 has been a year of growth, connection, and significant impact, and I am thrilled to share some of the highlights with you.

This year, we continued to build on the momentum of our programs and initiatives, reaching more individuals and families than ever before. Our commitment to providing vital resources, fostering community, and driving progress in Duchenne care remains at the heart of everything we do.

This year also marked a significant milestone as we were able to host our first in-person World Duchenne Awareness Day event in four years! It was a truly special occasion, bringing together 150+ members of the community–including families, industry partners, and fellow Duchenne advocacy organizations–for a day of connection, education, and inspiration. Recognizing the importance of inclusivity, we also maintained a robust virtual component, ensuring that individuals from across the globe could participate and feel part of this important day.

Expanding our reach and impact even further, we were excited to launch two new Camp Promise locations this past summer: Camp Promise Southeast and Camp Promise Southern California. These additions to our camp lineup provided even more young people and adults living with Duchenne and other neuromuscular disorders with the opportunity to experience the joy, friendship, and independence that Camp Promise offers.

As we look ahead to the coming year, we are filled with excitement and renewed determination. We are committed to expanding our programs, strengthening our partnerships, and continuing to provide unwavering support to families navigating the challenges of Duchenne. We have big plans in store, all aimed at making a tangible difference in the lives of those affected by Duchenne.

Thank you for being an integral part of the Jett Foundation family. Your support, dedication, and belief in our mission make our work possible. Together, we are truly making a difference.

With heartfelt gratitude,

Eric Snyder Executive Director Jett Foundation

Impact Report

1

Jett Giving Fund Empowers Families with Duchenne Through Essential Support Launched in 2017, the Jett Giving Fund was established to address the critical needs of families impacted by Duchenne muscular dystrophy, particularly the significant financial burden associated with essential equipment like accessible vehicles.

Recognizing the profound impact of limited mobility on daily life, the Jett Giving Fund has expanded its support to include emergency assistance and equipment grants, empowering families to navigate the challenges of living with Duchenne.

The Jett Giving Fund currently offers three main avenues of support:

1) The Accessible Vehicle Fund Assists families in acquiring accessible vehicles, enabling them to maintain independence, access medical care, and participate in community activities.

• 15 families accepted into the program • 42 applications received in 2024 • 2 accepted families had 2 children with Duchenne, 1 family had 3 children with Duchenne • Families accepted into the program came from 10 different states

A FAMILY TRANSFORMED: The Cruz Family Story The impact of the Jett Giving Fund is evident in the inspiring story of the Cruz family from Gainesville, Georgia. Three brothers, Victor (23), Christian (18), and Alan (16), all live with Duchenne muscular dystrophy. Due to the limitations of their existing vehicle, the family faced significant challenges in transporting their sons, often requiring them to manually lift wheelchairs and navigate unreliable public transportation. “ Traveling with the boys and lifting them each time became unsafe and nearly impossible,” shares their father, Martin.

Through the Jett Giving Fund’s Accessible Vehicle Fund, the Cruz family received crucial financial assistance to purchase a fully accessible van, significantly improving their mobility and quality of life. With their new vehicle, the family can now travel together safely and comfortably, attend medical appointments, and explore the world with renewed freedom. “ This accessible van is life-changing for our family,” says Martin. “We will now have unencumbered travel, and this will significantly reduce the physical tax on me and my wife’s bodies.”

The Cruz family’s journey exemplifies the profound impact of the Jett Giving Fund in empowering families affected by Duchenne to navigate the challenges of daily life with greater independence and dignity.

2

jettfoundation.org

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.”

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.

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.”

18% 14%

Other

Utility Bills

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:

25%

Food Insecurity

43%

Mortgage Assistance

Other: these were for car repairs, childcare, and hurricane/weather-related emergencies

3) Equipment Fund 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

Impact Report

3

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.

4

jettfoundation.org

Camp Promise is all about firsts!

Here are a few highlights • Attending Camp Promise • Catching a Bass fish • Doing archery • On a wheelchair accessible porch swing • On an accessible pontoon boat • Playing Bingo bingo • Playing trivia with my friends • Playing wheelchair soccer • Racing a boat I made • Riding an accessible bike!!

• Riding an accessible golf cart • Singing karaoke • Smashing an egg on someone’s head • Trying a chicken quesadilla • Trying Italian dressing • Trying whole grain cheerios • Using a hoyer lift at camp • Winning Bingo • Ziplining

“I really enjoyed kayaking. It was definitely challenging but I felt very safe and it was a very rewarding experience.”

Impactful Reach in 2024: • Camp Promise served a total of 261 campers (an increase of over 100 from 2023) at eight sessions in the United States. › 148 in-person Camp Promise participants supported by 200 volunteers › 113 Camp Promise Connect virtual participants › 500+ parents, siblings, and caregivers provided an opportunity for respite • 62% of camp participants served are ineligible to attend any other camp due to age restrictions or the specific needs of their condition

Beyond Camp Camp Promise extends beyond the summer months, fostering a sense of community and support year-round.

Campers develop lasting friendships and connections, providing a valuable support system throughout the year with virtual programs and events.

Jett Foundation’s Camp Promise continues to be a beacon of hope and joy for individuals with neuromuscular disorders, empowering them to live full and fulfilling lives.

Impact Report

5

6

jettfoundation.org

Impact Report

7

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

8

jettfoundation.org

WELCOME PACKET PROGRAM: A First Point of Contact Jett Foundation’s Welcome Packets serve as a crucial first touchpoint for many families navigating a Duchenne diagnosis.

It has also become a trusted resource for caregivers, clinicians, industry partners, and other key stakeholders. The packet contains valuable information on treatment, clinical trials, support letters from the community, and details about Jett Foundation’s programs.

In 2024, over 250 Welcome Packets were requested by individuals in 42 states. Families requesting packets identified the following as areas of support they were interested in the most:

24%

Social and enrichment opportunities

43%

Coping with the diagnosis

33%

Identifying the best care centers

These initiatives demonstrate Jett Foundation’s commitment to providing accessible education and support to the Duchenne community, empowering families with the knowledge and resources they need to navigate their journey.

Impact Report

9

Family Workshops Jett Foundation’s commitment to supporting families affected by Duchenne muscular dystrophy extends into vital educational programming. Jett’s Family Workshop series brings together leading clinicians, researchers, and families to share knowledge, discuss cutting-edge therapies and clinical trials, and connect families with valuable local resources.

This national education program provides a crucial link between families and the latest advancements in Duchenne care.

These workshops offer more than just information; they foster a sense of community and shared understanding, empowering families with the knowledge and resources they need to navigate the complexities of Duchenne. By connecting families with leading experts and local resources, Jett Foundation strengthens the support network for those affected by this challenging condition.

These intimate meetings offer a unique opportunity for families to learn from experts in a supportive environment. In 2024, Jett Foundation hosted four regional workshops, impacting over 150 registered participants.

“

It was so inspiring to hear directly from families and clinicians – there was a real sense of community and safety in the room”

The 2024 workshop locations included: • LCMC Health New Orleans, LA (April 6, 2024) • Levine’s Children’s Hospital Charlotte, NC (May 4, 2024) • Maine Health Portland, ME (September 28, 2024) • Penn State Health Harrisburg, PA (November 16, 2024)

10

jettfoundation.org

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.

2024 WEBINAR REGISTRANTS

14% Clinician/Medical Professional

76% Duchenne Individual and/or Family member

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.

6% Industry Partners

4% Advocacy Organizations

Impact Report

11

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.

12

jettfoundation.org

• 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.

• 3 In-person porch nites (TX, PA, IL), 29 attended, and 41 registered.

30 Ambassadors

from 21 states have a combined network of 750 families impacted

by Duchenne

Jessica with her son, Javon

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

Impact Report

13

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.

14

jettfoundation.org

Rare Disease Day On February 29th, Jett Foundation celebrated its seventh annual “Thriving with Duchenne” Rare Disease Day event. This year’s event featured a panel discussion moderated by Kyle Bryant and Sean Baumstark, hosts of the “Two Disabled Dudes” podcast, who shared their experiences living with Friedreich’s ataxia.

The Duchenne community was represented by panelists, including Colin Werth, Kris Napper, Race Martinez, Amanda Becker, and Chris Schlechty, who shared their personal journeys of overcoming challenges and achieving

their goals. From navigating college life to achieving driving independence, the panelists offered valuable insights and encouragement to the audience.

Leading up to the event, Jett Foundation invited individuals and families from the rare disease community to submit videos showcasing how they are “living to the fullest.”

These inspiring videos were shared on Jett Foundation’s Facebook page, further amplifying the voices of individuals living with rare diseases.

World Duchenne Awareness Day On September 7th, Jett Foundation hosted a series of events to commemorate World Duchenne Awareness Day. The highlight was an in-person luncheon and family event attended by over 150 individuals, including families affected

by Duchenne, medical professionals, and Jett Foundation supporters. The event featured engaging activities, a keynote address from Sam Safford, and opportunities for community members to connect. Sam’s remarks emphasized the importance of creating an inclusive society where accommodations are not exceptions but the norm.

In the evening, Jett Foundation hosted a virtual panel discussion titled “Raise Your Voice for Duchenne,” featuring experts in disability rights and advocacy.

The panel provided valuable insights into the importance of community advocacy and the power of collective action within the Duchenne community.

To further amplify awareness, Jett Foundation distributed 255 awareness boxes containing various items such as window clings, pinwheels, and light-up bracelets to families throughout the community. These boxes empowered families to spread awareness and show their “Stronger than Duchenne” pride within their own neighborhoods and communities.

Impact Report

15

16

jettfoundation.org

Impact Report

17

Team Jett & Signature Events Drive Impact through Athletic Endeavors In 2024, Jett Foundation witnessed an outpouring of support from its dedicated community of athletes and event participants. Over 250 individuals joined the Team Jett movement, embracing a variety of athletic challenges to raise crucial funds for families impacted by Duchenne muscular dystrophy.

From exhilarating triathlons like the Cohasset Triathlon and Hopkinton Title 9 Triathlon (Gals for Cal) events to the iconic Falmouth Road Race, Team Jett members demonstrated incredible dedication and perseverance.

Their efforts, alongside the inspiring participation of numerous individuals in Jett’s annual National Challenge, showcased the power of collective action in making a tangible difference.

18

jettfoundation.org

The Jett Golf Classic, a signature fundraising event, proved to be a resounding success. With the generous support of 156 participants and dedicated sponsors, the event raised $145,000. The impact of this fundraising was poignantly highlighted at the post-golf reception, where a grateful family recipient from the Jett Giving Fund’s Accessible Vehicle fund shared their inspiring story and showcased their new accessible van.

These remarkable achievements underscore the unwavering commitment of the Jett Foundation community. Through their dedication and generosity, participants are not only supporting vital programs but also empowering families and individuals affected by Duchenne to live more fulfilling lives with greater autonomy and control.

Impact Report

19

American Plumbing and Heating

Roger and Maura Carroll

Thank you to our donors

Anderson Fuel

Catalyst Pharmaceuticals

Arizona Community Foundation

Scott Chatterton

James Armitstead

Chinese Bible Church of Greater Boston

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.

Avidity Biosciences

Auburn Construction

Scott Clifford

Austin’s Hope

Coastal Bend Community Foundation Amanda Coleman

Beth Baird

Stephanie Colorado

Ball Family Stephanie Bandzak

Lora Cooley

Barbara Bresnan Memorial Foundation

John Cox Crane U Inc

Barkowskie Family

Crossfit Mob

Barry Carroll Foundation for Lodge 25 IN

Joseph Davis

Bay State Federal Savings Charitable Foundation

Amanda Dehart

Bergen Count Sheriff’s Department

Deen Day Sanders Sheila and Tony Dicioccio Joanne Donovan

Beth Israel Deaconess Hospital

Dr. Christiane Rougee Memorial Fund

Biomarin Bob’s Discount Furniture Charitable Foundation, Inc.

Dr. Squatch Kevin Ducie

Nicole Borden

Dyne Therapeutics

Marshall & Mary Brondum Special Assistance Foundation

Edgewise Therapeutics

James Bruce

Entrada Therapeutics

Emilson Family Foundation

John Buckley

Family Nail Inc

Gwendolyn Busch

Jim Ferguson

Michael Busch James Bustamante and Steph Howie John Calhoun Allison and Bob Caputo Cardinal Health

Emily Fields Finn’s Friends Firefighters of PBC Firefighters on a Mission Focus

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 20

jettfoundation.org

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.”

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.”

Fraternal Order Of Police Lodge

Mo McDonnell

Satellos

The HCA Foundation

FRC HOLDCO, LLC

McSherry Family

Scalora Consulting Group

John Furth

Michael’s Cause Inc.

Shea Concrete Products, Inc.

The Yale Charitable Foundation

Kenneth Gainey

MT Olive UCC

Chris and Dawn Shee

Ganot Family

Mt. Pleasant Baptist Church

John Skubina

Laurie and John Garbarino

My DMD Hero Inc.

Smith Sullivan & Brown PC

The Ginder Family

Dzu Nguyen

Yancey Snavely

Glance Networks

Le Nguyen

Eric and Melanie Snyder

Global DMC Partners

Long Nguyen

Solid BioSciences

Global Vision Advisors

Peter Nguyen

South Shore Bank

Alexis Grace

Nicholoff Family

Christine Stalling

Steven and Debbie Greenwall

NS Pharma

Laurie Stalling

Hale Family Foundation

Numotion Foundation

Gregory Stratis

Martha Hanson

Ocean Properties

Cindy Sullivan

Wellington Management

Scott Hastings

Oceanside Restoration

WestRock

Jamie Hawes and Ellen Hanson

Jeananne Oliphant

The Suneel Research Foundation

William Wheaton

Help Hope Live

Optio Biopharma Solutions

Robert Thal

Wheels for Wheels

Heritage Print Solutions

Scott Oran

The Assistance Fund

Maxline & Wilson Family

Nancy Herzog

Robert E & Marie Orr Smith Foundation

The Everyday Good Inc

Woodland Partners

The Family Office at Synovus

Suzanne York

The Flatley Foundation

Christine Zinman

Robert Higgins David Hirsch Ron Howie James Busch ITF Therapeutics LLC Jackson EMC Foundation, Inc JB’s Keys JD Cordage LLC Mary Johnson Adam and Sherrill Kaplan John Killian Ross Kimball Kingsbury Club & Spa Kindness Over Muscular Dystrophy Law Offices of Lipsey & Clifford Leaderboard New England Lhasa OMS Inc Liam’s Leep Craig Lipman Mariana Livingston Lina Lopardo Anne Luhr Lydonia Technologies Richard Lykes Scott MacDonald MacDonald-Miller Mahoney Law Group, P.C. Peter Mair Mammoth LLC Craig Martin

Orsini Pharmaceutical Services

Tito’s Handmade Vodka TLC Pediatrics Transamerica Lynn Treadaway Matt Trudeau John Turco Ultragenyx Pharmaceutical Inc. Vertex Pharmaceuticals Wave Life Sciences Mrs. Mary-Lou Weisman

Tom Osuch Nicolas Pakler Pathway Community Church Jennifer Patten

FY24 Financials

PepGen Inc

OPERATING REVENUE Foundation & Corporations

$ 2,624,276

Percheron Therapeutics

Individuals Contributions:

$ 1,443,378

Peters Family Foundation

Fundraising Events

$ 215,954

Total Support

$ 4,283,608

Erin Presutti

OPERATING EXPENSES Program Services

$ 2,504,374

PTC Therapeutics

Fundraising

$ 593,835

Purchasing Partners, Inc

General & Administrative

$ 324,470

Total Expenses

$ 3,422,679

PBC Benevolent Fund

Jim and Lynda Petropulos Pfizer Inc. Pledgeling Foundation

Quincy Mutual Fire Insurance Quitzau Family Regenxbio Diane Repress

Use of Funds

Retail Storefront Group 17%

Leo Robinson

Fundraising

Rodman Ride for Kids Romito Foundation

9%

General & Administrative

William Rose Gilbert Rosenberg Jacob Rosenberg Michael Ryan

74%

Program Services

Ryan’s Quest Sarepta Therapeutics, Inc.

21

STAFF Eric Snyder, Executive Director FINANCE & HR Allison Caputo PROGRAMS Niki Benfield

BOARD OF DIRECTORS Executive Board:

Christine McSherry, Jett Foundation Founder Ellen Hanson, Vice-Chair, Boston Children’s Hospital Alfred Jackson, Chair, Ketchum, Inc. Michael Mullin, Treasurer, Claro Advisors, LLC

Meghan Houston

Directors: Diana Johnson, Elite Clinical Network

Julie LeClair

Adrian Kielhorn, Alexion Pharmaceuticals

Trina Stelly

Melissa Paige, National Association of Medication Access & Patient Advocacy

Jessica Campbell

Alexa Tinsley DEVELOPMENT Maura Carroll Emily Hubert MARKETING & COMMUNICATIONS Zac Bentley Gabriella Costa

JETT FOUNDATION, INC.

390 Circuit Street, Norwell, MA 02061 p: 781-585-5566 | f: 781-585-5233 info@jettfoundation.org • jettfoundation.org

Colleen Pike, Lhasa OMS Leo Robinson, Wells Fargo Advisors Chris Schlechty, Microsoft