2023 Impact Report

Mission 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.

Our

Our Impact

by the numbers

2,000+ individuals served

70,000+ visits to our website

700+ educational workshop attendees and webinar views

300+ Family Support group participants

This year proved to be a tremendous year of growth and development for Jett Foundation. As an organization, we actively focused on the strength of togetherness, building upon relationships with partners and donors to advance our work and mission in the Duchenne community.

We forged new partnerships and reinvigorated connections with like-minded organizations in the community to better serve families through our renowned financial assistance program, Jett Giving Fund. These key collaborations, including Cure Dale’s Duchenne, helped us serve more families than ever before through the program’s three branches, allowing us to add four additional families to our 2023 Accessible Vehicle Fund roster, assist 47 families in our Emergency Fund, and open a new arm of the program: the Equipment Assistance Fund.

2023 also celebrated the long-awaited return of our signature fundraising event, the Jett Golf Classic. The event brought Jett Foundation supporters and friends, old and new, together for a beautiful fall day on the course, followed by a mission-focused reception raising crucial funds for our Camp Promise program. Thanks to the support of our sponsors and golfers, we were able to raise nearly $150,000 for our summer camp programming. In 2024, we are excited to add two new camp locations to our line up, expanding experiential opportunities for campers nationwide while providing much-needed respite for their families and caregivers.

Focusing on unmet needs in the community, Jett Foundation also hosted its first Mental Health Resource Fair which was met with a great response from the community. Individuals living with Duchenne, caregivers, and community members had the

opportunity to tune into a variety of mental health topics including a keynote address on self-care from nationally recognized Desiree Rew, LCSW, AMFT.

We invite you to learn more about the impact of all our programming in 2023 throughout this publication. The work accomplished is a direct result of the connections we have established over the years and continue to foster. Together with our partners, we can continue to deliver meaningful programs that make a difference in our community. We are grateful to our supporters, collaborators, and the families we partner with every day.

Thank you,

Eric Snyder Executive Director

Accessible Vehicle Fund

53 families applied to the Accessible Vehicle Fund program in 2023

15 vehicles delivered through the Accessible Vehicle Fund program <$49,000 average income of of applicant families

5 families in the program had multiple children impacted by Duchenne

Emergency Fund

66 grants awarded through the Emergency Fund

$85,000 total emergency support granted to families

$1,300 average amount of emergency support granted to families

A helping hand for families

with transportation needs and in times of difficulty

Elijah (12), Maxwell (8), and Luke (6) Benson are brothers from Goodyear, Arizona, living with Duchenne muscular dystrophy. As a family of six and with all three boys relying on mobility devices full-time, the Bensons faced many physical barriers to transporting themselves on a daily basis. They navigated daily life and getting to critical appointments dividing the family amongst two cars.

“We applied to the Accessible Vehicle Fund because the boys are in chairs full time and are non-ambulatory,” said Jonathon. “We took two vehicles everywhere we went and our schedule can get very crazy. It can take days just to attend their Duchenne appointments.”

Parents Jonathon and Jessica had to physically lift the boys into their vehicles and pick them up from school separately. As the boys’ needs continued to evolve with age, the Bensons turned to Jett Foundation’s Accessible Vehicle Fund for assistance.

“I never knew the true meaning of a superhero until I witnessed my boys living with Duchenne,” says Jonathon. “The obstacles and challenges that they overcome on a daily basis is incredible. They are the real heroes, and I am humbled to be able to share my life with them.”

September 24, 2023, brought cheer and joy to the family as their new safe and accessible vehicle was delivered.

“We most look forward to traveling together as a family now. We will also be able to take family vacations with all the equipment we need to maintain our boys’ mobility independence,” says Jonathon. “This will make our quality of life much better.”

The Benson Family is just one of the over 60 families Jett Foundation assisted this year through the Jett Giving Fund program. The fund offers families financial assistance through three branches of support: the Accessible Vehicle Fund, the Emergency

Fund, and, new in 2023, the Equipment Assistance Fund. These three funds help families obtain safe, accessible transportation, provide grants to families facing unexpected, emergency situations, and help families with small accessibility or medical items that are either not covered by insurance or too expensive.

Our annual sponsors and supporters make this program possible, and this year, we grew the reach of the program through partnerships with several fellow family foundations in the Duchenne space including Cure Dale’s Duchenne, Finn’s Friends, The Killian Family, Michael’s Cause, Kindness Over Muscular Dystrophy, and Ryan’s Quest. This collaboration allowed us to add four additional families to the 2023 Accessible Vehicle Fund program and offer grants to more families through the Emergency Fund.

“Jett Foundation has a proven track record of transparency and genuine support for families in our community. We trust in the work they are doing and rather than reinvent the wheel, Jett has already got the footwork done and the community knows to look to Jett Foundation for help.””

- RICK & LELIA GINDER, FOUNDERS OF CURE DALE’S DUCHENNE

Experiencing the magic

of Jett Foundation’s Camp Promise

Picture this: s’mores by the fire. Swimming. Fishing. Ziplining. Foam parties. Cabin hangouts. Dance parties.

And it’s all made by design to be completely accessible and welcoming for individuals of all mobility levels impacted by Duchenne muscular dystrophy and other neuromuscular disorders.

This is what summer at Jett Foundation’s Camp Promise is all about.

Camp Promise is one of Jett Foundation’s many transformational and beloved programs offering free summer camps, 18+ retreats, and year-round programming for kids, teens, and adults living with Duchenne and other neuromuscular disorders. It’s a one-of-a-kind opportunity that creates unforgettable memories, cultivates lifelong friendships, and makes first-time experiences possible for campers.

At Camp Promise - Rockies this summer, one mom, Michelle, experienced camp firsthand as her son Logan’s camp counselor.

“For Logan, Camp Promise was the best vacation ever and he says it’s even better than Disney,” Michelle shares. “Camp wasn’t somewhere we ever had to worry about accessibility because it was designed so that we didn’t have to worry.”

In Logan’s own words: “I love Camp Promise because it was so fun and I got to talk to so many other people. The s’mores were so good and my favorite activity was the accessible bikes.”

“As a mom, one of my favorite things about camp was hearing the power chairs all clicking at the same time. It seems like a silly thing, but Logan isn’t around other kids who use power chairs, and hearing those clicks simultaneously meant Logan was going off to have an adventure with friends who understood him and could relate to him in ways even I cannot.”

Jett Foundation staff works hard throughout the year to create the safe, trusted, and fun camp environment the community has come to know. This summer, 150 campers and 142

volunteers joined us across all five of our inperson camps and one virtual week of camp.

“Logan was reluctant to go to camp without me. After experiencing camp, he talks about wanting to go without me, and I think that alteration is incredible,” says Michelle. “Camp gave him so much confidence and independence. We could not have asked for a better experience than what Camp Promise offers.”

107 in-person Camp Promise participants supported by 142 Camp Promise volunteers

50% of participants were 18+ and have aged out of other camp options

300+ parents, siblings, and caregivers given a rare opportunity for respite

47 Camp Promise - Connect virtual participants

“It gives me a time to decompress and step away to give myself a break.”

- Cindy, mom to camper Cal

Camp Promise is made possible by our generous donors:

for the entire family Offering support

Family Support Groups

Jett Foundation assists family members through support groups to help build stronger support systems, relationships, education, and connections across the Duchenne community.

Porch Nite continued this year, marking its 5th year as a staple program in the community bringing together moms of children impacted by Duchenne across the country.

New this year, Carrier Conversations is an informal, intimate setting that ensures women feel comfortable and empowered in organic conversations that may include but are not limited to care, being a caregiver, self-care, medical issues, guilt, and more.

300+ caregivers

participated in 25 Family Support Groups sessions virtually and in-person

42 caregivers attended an in-person Porch Nite retreat in New Jersey, Florida, and South Carolina

Community Ambassadors

The Community Ambassador program aims to spread awareness about Duchenne and the programs and services that Jett Foundation provides through community ambassadors, who are individuals impacted by Duchenne, moms, dads, grandparents, siblings, and more.

These ambassadors are Jett Foundation’s extra ears, eyes, and voices in the Duchenne community. They are advocates, educational resources, and pillars of emotional support.

35 ambassadors

volunteered from 20 states engaging with an estimated 300 families

4 ambassadors spoke at Jett Awareness Day panel discussions

“I really just enjoy helping others and trying to help where I can. If I don’t have the answer, I seek out a path to help them so they can get an answer.”

- Ambassador Sophia Flynn, TX

Welcome Packets

Welcome Packets are free educational care packages delivered to the community, including both critical resources and messages of hope and encouragement from the community to help families cope with and navigate a Duchenne diagnosis. These packages are available to anyone interested in learning more about Duchenne and Jett Foundation including families, clinicians, teachers, and more. Packets include:

• Dan and DMD children’s book

• Clinical Trial Cheat Sheet

• Clinical Trial Flight Plan

• Health Insurance Flight Plan

• Certified Duchenne Care Centers

• Support letters from Jett Ambassadors

• Female Carrier resources

• and more

200+ packets were requested by families, clinics, and community members across 37 states

29% of people requesting packets were most interested in social and enrichment opportunities

26% of people requesting packets were most interested indentifying the best care centers

and supported online Staying connected

96% increase in Facebook engagement compared to previous year

1,000% increase in Instagram engagement compared to previous year

750 people average reach of social media posts

Clinician Meet and Greets

The Clinician Meet and Greet Program began in 2022 when we had a large amount of clinics requesting our Welcome Packets seeking information for their patients. Additionally, a few Jett Foundation Community Ambassadors had identified clinics with limited resources and knowledge about Duchenne.

The goal of the program is to educate as many clinics as possible, especially in rural and southern states, and bring our resources and educational materials to both clinicians and patients.

In 2022 and 2023, Jett Foundation met with the following 10 clinics who see a total of 1,000 patients each year.

• Cinncinati Children’s

• Duke University

• UT Southwestern Medical Center

• Penn State Health

• UC Davis

• Nemours Children’s Orlando

• Gillette Children’s Hospital

• Boston Children’s Hospital

• Children’s Hospital of Philadelphia

• Arkansas Children’s Hospital

2,912 members across Jett Foundation Facebook groups

71,529 visits to our website

50,000 people total annual reach across social media posts

19,000 newsletter subscribers

49,236 website users

New! Jett’s Resource Library

In 2023, Jett Foundation launched a user-friendly online Resource Library on jettfoundation.org.

Community members can use search and filter tools to access educational materials and resources that fit their needs.

Educational opportunities

Family Workshops

4 in-person Family Workshops in Florida, Minnesota, Montana, and Missouri

137 registrants across all four workshops

34% of families in attendance stated they had been diagnosed within the last 1-3 years for the entire community

Family Workshops are Jett Foundation’s national educational program that brings together clinicians, researchers, and families affected by Duchenne to learn about care, crucial information, and resources in many cities each year. This year, Jett stopped in Florida, Minnesota, Montana, and Missouri.

During these workshops, participants heard from Duchenne clinicians, pharmaceutical companies in the Duchenne space, and local experts on topics like clinical trials, standard of care, physical therapy, adaptive sports, and much more.

“This event was a great experience and provided us with much needed information. The families and everyone involved were amazing. We will be attending more of these events in the future.”

Community Webinar Series

To help reach a broader audience, throughout the year Jett Foundation hosts virtual educational events. The Community Webinar Series is focused on ensuring that our Duchenne community and beyond is better prepared for those unexpected moments, challenging medical decisions, and difficult stages while on a Duchenne journey. Some of this year’s topics included:

• The Perfect Lift

• Transition of Care in Duchenne

• Planning for Travel with a Disability

• Navigating Special Needs Trusts

• School Accessibility and Participation in DMD

• Air Travel with Duchenne

• Advocating for Yourself During the Transition Process

• Clinical Trials

12 webinars

featuring various educational topics and pharmaceutical presentations

34 states and 7 countries represented by webinar registrants

300+ registrants across all webinars throughout the year

“Excellent topic and points. It makes me feel more comfortable about having these conversations.”

2023 WEBINAR REGISTRANTS

100% of participants

stated they were very likely to attend a future webinar

600+ views

across all 2023 webinar recordings on Jett website and YouTube channel

Raising awareness together

throughout the year

Rare Disease Day 2.28

Jett Foundation hosted its 6th annual Rare Disease Day event, Thriving with Duchenne, with a presentation and panel discussion focused on anxiety and mental health in Duchenne muscular dystrophy. Moderated by Kyle Bryant and Sean Baumstark, hosts of the

375 registrants

250 event kits mailed

Two Disabled Dudes Podcast, this year’s event featured six panelists who shared their experiences managing mental health and anxiety, as well as thriving through the challenges it brings while facing a rare disease as an individual, family member, or professional.

68% of registrants were individuals or family members impacted by Duchenne

68% of registrants had never attended a Jett Rare Disease Day event before

World Duchenne Awareness Day 9.7

This year, Jett brought awareness, spirit, and creativity to the homes and buildings of our Duchenne community through Awareness Boxes and virtual events. To recognize this year’s global WDAD theme of Breaking Barriers in Duchenne, Jett Foundation hosted a Breaking Barriers Panel Discussion moderated by the Two Disabled Dudes. The panel involved members from the

249

WDAD Boxes ordered

89% of box orders were from families

Duchenne community who spoke on the ways they are breaking barriers in access to care and identified areas that still need improvement. 13 Duchenne clinics, 17 pharmaceutical companies, eight clinicians, and seven Duchenne organizations took part in 2023 WDAD events.

1,000+ event shirts ordered and shipped globally

Mental Health Resource Fair 10.10

This year marked the inaugural year of Jett Foundation’s Mental Health Resource Fair. The event provided a safe

66% of registrants were individuals or family members impacted by Duchenne

4 event speakers

40 states and 4 countries reached

space to engage with speakers during sessions that covered topics like self-care, anxiety, grief, loss, and more.

50 session attendees throughout the day

The Return of the EVENTS

Jett Golf Classic

Jett Foundation’s Golf Classic tournament fundraiser returned in full force on October 2, 2023.

The tournament took place at the pristine Pinehills Golf Club in Plymouth, Massachusetts over two 18hole courses.

This year, Jett Foundation hosted 168 golfers to raise important funds and awareness for Jett’s Camp Promise programming.

“It was a great day to have a great day while supporting our friends at Jett Foundation,” says the Shea Concrete team, Jett Golf Classic Gold Sponsor.

“Teamwork makes the dream work… keep up the great work and thank you to all of the sponsors and volunteers who made today possible!”

Our Jett Golf Classic was also made possible by Robinson Financial Group, Lubin & Meyer, Quincy Mutual Group, South Shore Bank, Rodman for Kids, Appcast, Auburn Construction, Bob’s Furniture, Claro Advisors, Cordage Commerce Center, Global DMC Partners, Heritage Print Solutions, Lhasa OMS, Lyons Group, Oceanside Restoration, Sarepta Therapeutics, and Stys Hospitality Initiative.

through Team Jett athletic events Building a movement

Team Jett swept the nation this year raising critical funds and awareness for Jett Foundation programs and Duchenne muscular dystrophy. 112 athletes from 15 states joined the Team Jett ranks across events like our National Challenge, the Cohasset Triathlon, Gals for Cal, and the Falmouth Road Race. Together, teams raised nearly $90,000 in support of Jett Foundation’s mission.

15 Years of the Gals for Cal

This year marked the 15th anniversary of the Gals for Cal triathlon team. The Gals for Cal triathlon team began with one mom, Cindy Quitzau, and her son Cal, who was diagnosed with Duchenne 15 years ago. Cindy was determined to challenge herself and challenge Duchenne while raising funds and awareness for Jett Foundation and the families we serve. The Gals’ dedication to our community

has resulted in nearly $800,000 raised since their founding, which has provided vital support to Jett Foundation’s mission of improving the lives of individuals and families impacted by Duchenne. Among our 2023 Gals for Cal team were six moms of individuals living with Duchenne including Annie Ganot who welcomed 20 of her colleagues from team sponsor Solid Biosciences.

Thank you to our donors

Our donors are what makes it possible for Jett Foundation to empower families and fight Duchenne. Thank you to the people and organizations who provided a contribution of $1,000 or greater during FY23 through financial gifts, in-kind donations, or peer-to-peer fundraising.

Accredo Health

Ahmad-Reza Saadat

Alexion Pharmaceuticals

Alyssa Bowlin

Amanda McQuade

Anderson Fuel

Andrew & Amy Bennett

Annie and Ilan Ganot

Antisense Therapeutics

Ashley Peterson

Astellas Pharma

Auburn Construction

Avidity Biosciences

Beko

Beth Israel Deaconess Hospital

Biogen

Biomarin

Bob’s Discount Furniture

Charitable Foundation, Inc.

Brabo Payroll

Brandon Benfield

Brian Nicholoff

Brighthouse Services

Brooke Foulk

Bryan Lamb

Camunda

Cara Covault

Catalyst Pharmaceuticals

Catherine Chaulet

Cheryl Botts

Cheryl Farley

Cheryl Pokraka

Chris Schlechty

Christine McSherry

Christpher and Dana Reeve Foundation

Church In The City

Cindy and Curt Quitzau

Colony Lions Club

Conjugate Group, LLC

Connecticut Chiefs Hockey

Craig Martin Dahl Gosnell

Darren Toy

David & Hydee Oehler

David Hirsch

Denise Mair

Derrick Cantrell

Dyne Therapeutics

Edgewise Therapeutics

Elle Hanson and Jamie Hawes

Entrada Therapeutics

Eric and Melanie Snyder

Eric Miller

Erik Chipman

Eugene Choi

Finn’s Friends

Four Core Valuations, LLC

Frank & Lisa Tower

Fred O’Neal

Gabriella & Kevin Costa

Genentech, Inc.

Glenn Gargac

Global DMC Partners

Global Vision Advisors

Gordon & Shirley Hains

Greg Hill Foundation

Haynes Flat Baptist Church

Heritage Print Solutions

Herminia Martinez

High Knob Missionary Baptist Church

Hungry Penguin

Ian Villarreal

Italfarmaco SpA

James Armitstead

James Hess

Janet Wade

Jarrod Gomes

JB’s Keys

JD Cordage LLC

Jeananne Oliphant

Jesse Gregory

Jessica and Chris Curran

Jim Daniels

Joanne Donovan

Joaquin’s Warriors

John and Stephanie Killian

John & Denise Buckley

John Hurley

John Turco

Joslyn Phelps

Judy Toy

Justin Horne

Justin Moore

Karen and Robert Hale

Kenneth Gainey

Kevin Ducie

Kevin Piotrowski

Kim Ramsey

Kimberly Arnholt

Kimberly Weurtz

Kindness Over Muscular Dystrophy Inc.

Kingsbury Club Medfield, Inc.

Kristen Cain

Laura Curtiss Feder

Laura Gilman

Lelia and Rick Ginder

Lenore Burr

Leo Robinson

Lhasa OMS, Inc.

Lianette Gonzalez

Lindsay Nelson

Lisa Brooks

Lisa Mooring

Longfellow Design Build

Loretta Morse

Louie Martinez

Lyons Group

Mainstay Investments

Mariana Livingston

Mark Alemany

Martha Hanson

Mary Tarantino

Matthew Seals

Maura and Roger Carroll

Melanie Ballestas

Messinger Mortuary Charitable Foundation

Michael’s Cause Inc.

Mike Mullin

Mindy Hall

Nicole Borden

Norbert Schmitt

NS Pharma

Oceanside Restoration

Orsini Pharmaceutical Services

Pamela Mork

Panorama Global Fund

Patrick Regan

Paul Nardozzi

PepGen Inc

Pfizer Inc.

PTC Therapeutics

Quincy Mutual Fire Insurance

Rebecca Partin

Rebecca Toy

REGENXBIO

Rehabilitation Equipment Associates Inc.

Robert Higgins

Robert Thal

Rockland Trust Charitable Foundation

Rodman Ride for Kids

Ryan’s Quest

Sandra Moore

Santhera Pharmaceuticals, Inc.

Sarepta Therapeutics, Inc.

Scott and Linda Hastings

Shea Concrete Products, Inc.

Shell Drive Development LLC

Smith Sullivan & Brown PC

Solid BioSciences

South Shore Bank

Starbucks Foundation

Stealth BioTherapeutics

Stephanie Colorado

Stephanie Deyo

Stephen Howie and James Bustamante

Strength In Numbers LLC

Stys Hospitality Initiative

Suzana Kim

Suzanne Kramermorton

Team Select Home Care

The Assistance Fund

The Bay State Federal Savings Charitable Foundation

The Edelman Family Foundation

The Flatley Foundation

The Yale Charitable Foundation

Tony/Gloria D’Ottavio

Toranj

Tsuha Foundation

Ultragenyx Pharmaceutical Inc.

Vertex Pharmaceuticals

Wave Life Sciences

Weston Borntrager

Wilfred Husman

Woodland Partners

FY23 Financials

CHAMPIONING OUR MISSION: THE FLATLEY FOUNDATION

“I was watching a piece on the news years ago when the H1N1 virus was circulating around. As I listened, it was said that the MDA pulled their funding to help send the kids to camp despite the parents still wanting them to go. I thought that was a really terrible thing to do since it was so important for them to have this time with peers. I reached out to Christine and Jett Foundation has been a passion of mine and our Foundation ever since.

It is just incredible to see how many kids with Duchenne and their families have been helped. We could not be more proud to be a part of this great organization. Jett Foundation is truly inspiring. Campers are able to live as normal a life as possible with the help of Jett Foundation.

Anyone who has the opportunity to see all the hard work that goes into making these opportunities come to life would be lucky. The videos and the huge smiles on the faces and the progress they have made is just heartwarming.”

MARY MARGARET

The Flatley Foundation

STAFF

Eric Snyder, Executive Director

FINANCE & HR

Allison Caputo

PROGRAMS

Niki Benfield

Jessica Campbell

Meghan Houston

Julie LeClair

Trina Stelly

Alexa Tinsley

DEVELOPMENT

Maura Carroll

Emily Hubert

MARKETING & COMMUNICATIONS

Zac Bentley

Gabriella Costa

BOARD OF DIRECTORS

Executive Board

Christine McSherry Jett Founder & Director Emmes

Ellen Hanson, Chair Boston Children’s Hospital

Alfred Jackson, Vice-Chair Ketchum, Inc.

Michael Mullin, Treasurer Claro Advisors, LLC

Directors

Diana Johnson, Elite Clinical Network

Wendy Erler, Alexion Pharmaceuticals

Adrian Kielhorn, Alexion Pharmaceuticals

Melissa Paige, National Association of Medication Access & Patient Advocacy

Colleen Pike, LHASA

Leo Robinson, Wells Fargo Advisors

Chris Schlechty, Microsoft

Robert Stubbs, Careport Health