Welcome Package
Been diagnosed or want to learn more?
Request a Package
Treatment & Care
The medical fight against Duchenne.
Read More
Duchenne News
The latest from our partners.
Read Now
Join Our Community
Learn more about our programs.
Community Ambassadors
Meet Our Community Ambassadors.
Clinical Trials
A quick look at investigational drug studies.
Volunteer Opportunities
Ways to get involved and help raise funds and awareness for Duchenne.
Volunteer Today
Community Ambassadors
These ambassadors are Jett Foundation’s extra ears, eyes, and voice.
Toolkits
View our resources targeted toward volunteers.
Our Resources
Become a Partner
Learn about creating a partnership and joining our community.
Get Started
Resource Library
Read about our resources for Partners.
Resources for Partners
How To Help
Make a difference in the lives of those living with Duchenne.
Get Started Volunteering
Clinical Trials
A quick look at investigational drug studies.
Read More About Clinical Trials
Duchenne News
Stay up to date with the latest discoveries.
Read Now
Book: Dan And DMD
This book will help parents and guardians as they prepare to talk to their children about Duchenne.
Read Here
Our Insurance Flight Plan
Our Health Insurance Flight Plan breaks down options that may be available to you.
Request a Flight Plan
Resource Library
Read about our resources for Healthcare Providers.
Resources for Healthcare Providers
We are excited to announce that we are hosting three, in-person Family Workshops in 2022. While we are planning to be back on the ground with events in 2022, these plans are subject to change depending on COVID-19 safety guidelines.
Dates and locations are subject to change
When: April 30, 2022
Where: Irvine Marriott Hotel – Irvine, California
Download the Irvine Family Workshop Agenda
Associate Director for Clinical Research, UC Davis Department of Physical Medicine
Dr. Henricson joined us in Irvine, CA to help families understand more about behavior in Duchenne as well as preparation for clinical trials. He presented on the use of Bayley-III development measurement and online screening tools to characterize early childhood behavioral phenotype in boys with Duchenne muscular dystrophy, as well as brain dystrophin networks.
Duchenne Mom and Founder of Joaquin’s Warriors
Sara Aluffi is the mother of Joaquin Aluffi (8) who lives with Duchenne muscular dystrophy. Sara provided insight on living with Duchenne and participating in a clinical trial from a parent’s perspective. The Aluffi family launched their nonprofit, Joaquin’s Warriors, in 2018 after facing the challenges of Duchenne muscular dystrophy for years. Their nonprofit aims to raise money for Duchenne research, and they recently partnered with Jett Foundation’s Jett Giving Fund program.
When: October 1, 2022
Where: Venue TBD
Colorado Workshop Agenda Coming Soon!
Pediatric Neuropsychologist, Dept. of Rehabilitation Medicine, Children’s Hospital Colorado
Dr. Christine Petranovich also serves as an assistant professor in the University of Colorado Denver School of Medicine. At Children’s Hospital, Dr. Petranovich completes neuropsychological evaluations for children and teens with complex medical histories, including acquired brain injury and neuromuscular disorders. Her research is focused on behavioral, emotional, and cognitive outcomes in children and adolescents with conditions that impact brain functioning. Dr. Petranovich is particularly interested in understanding and supporting the transition to adult life for teens with complex medical problems.
Pediatric rehabilitation psychologist at Children’s Hospital Colorado
Dr. Tess Simpson is a pediatric rehabilitation psychologist at Children’s Hospital Colorado and an assistant professor at the University of Colorado School of Medicine, Department of Physical Medicine & Rehabilitation. Her clinical and research interests focus on promoting positive child, adolescent, and family adjustment for patients with rehabilitation health needs.
When: November 12, 2022
Where: Venue TBD
Texas Workshop Agenda Coming Soon!
Duchenne Mom and Jett Foundation Community Ambassador
Susan Caldwell is a single parent to Ryan Michael (14) who has Duchenne Muscular Dystrophy. Susan can’t wait to send her son to Jett Foundation’s Camp Promise in the near future. In addition to working full time, Susan is active in her church and son’s Boy Scouts’ community. Susan has also been a Jett Community Ambassador for one year, and hopes to create more recognition around Jett Foundation’s support for Duchenne families. She enjoys attending Porch Nites and educational conferences to learn more about Duchenne.
Duchenne Mom and Jett Foundation Community Ambassador
Tammy has been part of the Duchenne community for 17 years. Her son, Tristan, was diagnosed with Duchenne muscular dystrophy at the age of two. Tammy says her family of three has mourned and rejoiced while continuing to learn how to navigate this life.
One of the most important things to Tammy is getting families the help and information they need as soon as possible. She says, “I feel that our families have to jump through so many hoops to get any type of assistance, be it financial, physical, or emotional. Home modifications, equipment,
and accessible vehicles are a struggle to obtain. I am hoping to
help others find their way through this.”
Through these workshops, we empower patients and families with the knowledge needed to be their own best advocates, spread awareness about Duchenne in the medical field, and help accelerate research and development.
During these workshops, you’ll hear 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. You’ll also learn about helpful resources and our direct service programs such as Camp Promise, Jett Giving Fund, and Community Ambassadors.
For the safety and wellbeing of our community amid the COVID-19 outbreak, we began holding our educational programming virtually.
This year, as we bring back our in-person workshops, we will also continue to host webinars virtually in order to reach more families across the world. Check out our upcoming webinars or previous recordings below!
Jett Foundation, Inc.
36 Cordage Park Circle
Suite 328 | Plymouth, MA 02360
781-585-5566 | info@jettfoundation.org
Sign up to receive our newsletter and updates.
Required fields are denoted with an asterisk (*)