2023 Impact Report

Jett Foundation Impact Report 2023

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Our 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.

2,000+

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Our Impact by the numbers

individuals served

70,000+

visits to our website

700+

educational workshop attendees and webinar views

300+

Family Support group participants

WELCOME

Letter from

the Executive Director

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 Jett Foundation Impact Report 2023

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15 vehicles

<$49,000

5 families

applied to the Accessible Vehicle Fund program in 2023

average income of of applicant families

delivered through the Accessible Vehicle Fund program

in the program had multiple children impacted by Duchenne

Emergency Fund

Accessible Vehicle Fund

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53 families

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

JETT GIVING FUND

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

Jett Foundation Impact Report 2023

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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.

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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.”

CAMP PROMISE

107 in-person Camp Promise participants supported

by 142 Camp Promise volunteers

Camp Promise is made possible by our generous donors:

50%

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

300+

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

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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

Jett Foundation Impact Report 2023

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Offering support

for the entire family

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

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.”

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4 ambassadors

- Ambassador Sophia Flynn, TX

200+ packets

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:

• • • • • • • •

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 Dan and DMD children’s book were most interested Clinical Trial Cheat Sheet indentifying the best Clinical Trial Flight Plan care centers Health Insurance Flight Plan Certified Duchenne Care Centers Support letters from Jett Ambassadors Female Carrier resources and more

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

SUPPORT & CONNECTION

Staying connected

and supported online

96% increase

1,000% increase

750 people

50,000 people

2,912

19,000

71,529

49,236

in Facebook engagement compared to previous year

average reach of social media posts

members across Jett Foundation Facebook groups

visits to our website

in Instagram engagement compared to previous year

total annual reach across social media posts

newsletter subscribers

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.

Jett Foundation Impact Report 2023

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E D U C AT I O N

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

137 registrants across all four workshops

Educational opportunities

for the entire community

34% of families

in attendance stated they had been diagnosed within the last 1-3 years

Family Workshops 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 10

eeded information. The families and everyone involved were amazing. n We will be attending more of these events in the future.”

Community Webinar Series

“Excellent topic and points.

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:

• • • • • • • •

It makes me feel more comfortable about having these conversations.”

2023 WEBINAR REGISTRANTS

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

300+ registrants

34 states

100% of participants

featuring various educational topics and pharmaceutical presentations

and 7 countries represented by webinar registrants

across all webinars throughout the year

stated they were very likely to attend a future webinar

600+ views

across all 2023 webinar recordings on Jett website and YouTube channel Jett Foundation Impact Report 2023

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AWARENESS

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

68% of registrants were

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.

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

40 states and

4 countries reached

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% 12

of registrants were individuals or family members impacted

by Duchenne

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event speakers

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

50 session attendees throughout the day

Jett Foundation Impact Report 2023

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EVENTS

The Return of the

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.

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“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.

Jett Foundation Impact Report 2023

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TEAM JETT

Building a movement

through Team Jett athletic events

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

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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.

Jett Foundation Impact Report 2023

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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 Conjugate Group, LLC Ahmad-Reza Saadat Connecticut Chiefs Hockey Alexion Pharmaceuticals Craig Martin Alyssa Bowlin Dahl Gosnell Amanda McQuade Darren Toy Anderson Fuel David & Hydee Oehler Andrew & Amy Bennett David Hirsch Annie and Ilan Ganot Denise Mair Antisense Therapeutics Derrick Cantrell Ashley Peterson Dyne Therapeutics Astellas Pharma Edgewise Therapeutics Auburn Construction Elle Hanson and Jamie Avidity Biosciences Hawes Beko Entrada Therapeutics Beth Israel Deaconess Eric and Melanie Snyder Hospital Eric Miller Biogen Erik Chipman Biomarin Eugene Choi Bob’s Discount Furniture Finn’s Friends Charitable Foundation, Four Core Valuations, LLC Inc. Frank & Lisa Tower Brabo Payroll Fred O’Neal Brandon Benfield Gabriella & Kevin Costa Brian Nicholoff Genentech, Inc. Brighthouse Services Glenn Gargac Brooke Foulk Global DMC Partners Bryan Lamb Global Vision Advisors Camunda Gordon & Shirley Hains Cara Covault Greg Hill Foundation Catalyst Pharmaceuticals Haynes Flat Baptist Church Catherine Chaulet Heritage Print Solutions Cheryl Botts Herminia Martinez Cheryl Farley High Knob Missionary Cheryl Pokraka Baptist Church Chris Schlechty Hungry Penguin Christine McSherry Ian Villarreal Christpher and Dana Reeve Italfarmaco SpA Foundation James Armitstead Church In The City James Hess Cindy and Curt Quitzau Janet Wade Colony Lions Club Jarrod Gomes 18

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

REVENUE Fundraising 22%

USE OF FUNDS

Program Services 69%

General & Administrative 9%

Annual Support Events Programs Other Income

$ 189,245 $236,522 $3,065,918 $ 116,000

TOTAL SUPPORT

$ 3,607,685

EXPENSES

Program Services

Fundraising General & Administrative

$ 1,889,537 $ 599,960 $249,689

TOTAL EXPENSES

$ 2,739,186

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.”

M A R Y

M A R G A R E T The Flatley Foundation

Jett Foundation Impact Report 2023

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STAFF

BOARD OF DIRECTORS

Eric Snyder, Executive Director

Executive Board

FINANCE & HR Allison Caputo

Christine McSherry Jett Founder & Director Emmes

PROGRAMS

Ellen Hanson, Chair Boston Children’s Hospital

Niki Benfield Jessica Campbell Meghan Houston Julie LeClair Trina Stelly Alexa Tinsley DEVELOPMENT

Alfred Jackson, Vice-Chair Ketchum, Inc. Michael Mullin, Treasurer Claro Advisors, LLC Directors Diana Johnson, Elite Clinical Network

Maura Carroll

Wendy Erler, Alexion Pharmaceuticals

Emily Hubert

Adrian Kielhorn, Alexion Pharmaceuticals

MARKETING & COMMUNICATIONS

Melissa Paige, National Association of Medication Access & Patient Advocacy

Zac Bentley Gabriella Costa

Colleen Pike, LHASA Leo Robinson, Wells Fargo Advisors Chris Schlechty, Microsoft Robert Stubbs, Careport Health

65 Cordage Park Circle, Suite 130 Plymouth, MA 02360 info@jettfoundation.org p: 781-585-5566 | f: 781-585-5233

www.jettfoundation.org