Jett Programs & Information
Jett Giving Fund
The Jett Giving Fund offers families financial assistance through two main branches of support: the Accessible Vehicle Fund and the Emergency Fund. The Accessible Vehicle Fund helps families obtain safe, accessible transportation. The Emergency Fund provides grants to families facing unexpected, emergency situations.
Camp Promise
Camp Promise is Jett Foundation’s free, week-long camp and year-round program for kids, teens, and adults with neuromuscular disorders. Each year, campers and volunteers from all over the country join us at our many locations. Camp Promise is proud to offer our program at FIVE locations across the country, and one camp virtually.
Workshops & Webinars
In-person Family Workshops and our Community Webinar Series help bring resources, information, and knowledge to families and communities about important Duchenne topics like managing care, clinical trials, and more.
Dan & DMD Book
In this beautifully illustrated and thoughtfully worded children’s book, Dan introduces children to Duchenne by sharing a look into his life and his feelings.
Impact Report
Read about the impact of our donors’ support throughout the year.
Social Security Overview
This Jett Foundation blog post features helpful resources and links for navigating the Social Security programs our government provides.
Duchenne Knowledge & Booklets
Clinical Trial Flight Plan
A guide to navigating clinical trials in Duchenne. This booklet will walk you through the basic steps of participating in a trial, key glossary terms, where to find clinical trials, and more.
Insurance Flight Plan
A guide to navigating the insurance process in Duchenne. This booklet will teach you the basics about insurance, including insurance claims and denials.
DMD & the Heart
The heart is a muscle, too! This article, written by Dr. Chet Villa–a pediatric cardiologist at Cincinnati Children’s–discusses cardiac issues and care in Duchenne.
Clinical Trial Cheat Sheet
For a quick look at enrolling or soon to be enrolling investigational drug studies in Duchenne and their enrollment criteria, check out our Clinical Trial Cheat Sheet.
PPMD Certified Duchenne Care Centers
Consider visiting a Certified Duchenne Care Center. If you are not receiving care from one of these medical institutions, please make sure to bring the Duchenne Care Guidelines to your current physician. PPMD’s Certified Duchenne Care Center Program helps to ensure that centers comply with the standards of care and services that have been established in the Duchenne Care Guidelines.
MDA Care Center Network
Click to visit a list of Muscular Dystrophy Association’s care center locations in the United States. The MDA Care Center Network offers tens of thousands of appointments each year for individuals living with muscular dystrophy, ALS, and other neuromuscular diseases to access expert multidisciplinary care, clinical trials, and to connect with MDA and the neuromuscular community.
Family Support
Family Support Letters
Letters from families to families offering support, encouragement, and advice for navigating a Duchenne journey.
Jett Community Ambassadors
Our Community Ambassadors are here for you! Read our Ambassadors’ bios to make a connection with someone in your area or in a similar stage of their journey.
Support Groups
Learn more about our support groups for the whole family. Our signature support group for moms, Porch Nite, meets both in-person and virtually.
Tools for School
Tools for School Kit
Print this packet to bring to your child’s teacher to help them better understand Duchenne and your child’s needs in the classroom setting.
The Red Balloon
The Red Balloon is a classroom activity that helps students learn about Duchenne and reflect on what the meaning of strength.
Female Carrier Resources
What is a female carrier? A carrier is a person who carries a genetic mutation in their genes This mutation can be passed on to their children. In Duchenne, only females can be carriers because the mutation is located on the X chromosome. This means that while Duchenne is primarily found in males, it can affect females as well.
Understanding what it means to carry a genetic mutation can be confusing and often difficult to navigate. We created this helpful guide of empowering resources so carriers in our community can better advocate for themselves and their families. If you have any questions or need additional support, please reach out to us, and we will be happy to help in any way we can.
Transition Resources
Below are tools from resource centers dedicated to helping children, young adults, and families transition from pediatric to adult health care.
Health Care Transition Timeline for Youth and Young Adults
A proposed health care transition timeline from Got Transition from ages 12-25.
Health Care Transition Quiz for Parents and Caregivers
Is your child ready to transition to adult health care? Take this Got Transition quiz for guidance on your family’s transition period.
Health Care Transition Quiz for Youth and Young Adults
Are you ready to transition to adult health care? Take this Got Transition quiz for help on what works best for you and your timeline.
Six Core Elements of HealthCare Transition: Transitioning Youth to an Adult Health Care Clinician
Got Transition packages and tips for Internal Medicine, Family Medicine, and Med-Peds Clinicians on transitioning children and young adults to adult clinicians.
Six Core Elements of HealthCare Transition: Transitioning to an Adult Approach to Health Care Without Changing Clinicians
Curious about transition of health care when clinicians aren’t being changed? Got Transition provides a package and explanations for the best approach.
Six Core Elements of HealthCare Transition: Integrating Young Adults into Adult Health Care
Got Transition dives deep into how to best transition young adults into adult health care.
Advocacy Organization Resources
Below are resources from advocacy organizations in the Duchenne community. These resources provide helpful tips and information on Duchenne in schools, state-specific resources, assistance for the whole family, and more.
Physical Therapy for Families & Caregivers by CureDuchenne
A guide and benefits to physical and occupational therapy for families impacted by Duchenne.
Little Hercules Foundation Resources
Links and support for families impacted by Duchenne from financial services to travel to clinical trials.
State-Specific Resources by PPMD
Helpful topics and Duchenne help, categorized by each of the 50 U.S. States.
Classroom Resources by PPMD
A school Duchenne kit that includes materials on a diagnosis, care, IEPs, 504 Plans, and more.
ASGCT Gene Therapy 101
This Gene Therapy Basics webpage from the American Society of Gene + Cell Therapy helps with understanding genes through descriptions, visuals, and videos.
A Guide for Families by PPMD
Tools for Duchenne on steroids, cardiac, different family members/caregivers, and more.
CureDuchenne’s DME Guide
This Durable Medical Equipment
(DME) Guide has been developed by CureDuchenne to provide families and caregivers with a comprehensive resource of beneficial equipment.
Duchenne and Rare Disease Books
Books written about Duchenne and rare diseases for parents, individuals, and children.
Care for Skin from PPMD
Parent Project Muscular Dystrophy provides skin care guidelines for individuals living with Duchenne and Becker muscular dystrophy.
Accessible Van Giveaway - MDFF
Muscular Dystrophy Family Foundation’s application opens each year on December 1st and closes the following February 15th.
Upcoming Advocacy Partner Events
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Other Resources
The PERFECT LIFT
A revolutionary, lightweight, and portable solution designed for everyone—from firefighters, EMS crews, and doctors to caregivers, teachers, event staff, coaches, and families.
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