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Book: Dan And DMD
This book will help parents and guardians as they prepare to talk to their children about Duchenne.
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September 7, 2023
For the past 7 years, Jett Foundation has hosted this annual event of celebration and remembrance of our Duchenne community. Stay tuned for details on our 9th annual WDAD on September 7, 2024, when we will connect with our community throughout the day.
In honor of this annual worldwide day dedicated to Duchenne muscular dystrophy, we bring individuals and families, Duchenne experts, and industry partners together to recognize different aspects of Duchenne life, acknowledge the challenges still to come, and show that we are Stronger than Duchenne.
Want to submit a video sharing how you’re breaking barriers in Duchenne? There is still time to do so! We will be sharing any additional submissions throughout the month of September 2023 in our stories.
Welcome to WDAD with Jett Foundation Tune in on social media for a video welcome message from Jett’s Executive Director, Eric Snyder, to kick off the day. |
WDAD Breaking Barriers Panel Discussion The Two Disabled Dudes moderate a panel discussion on the ways our community is breaking barriers in access to care and as we identify areas that still need improvement. |
Adaptive Demonstrations During these virtual demonstrations, we will be joined by community members who will share adaptive tools, resources for self-care, and tips for independent living. Choose from two demonstrations that will be happening simultaneously: cooking at home or adaptations for independent living. Download the recipe we will be following and check out our Amazon List of Accessible Kitchen Essentials ahead of time. |
Luminaria Closing Ceremony |
Ideas to Get Your Local Community Involved
Jett Foundation’s Awareness Boxes are an exciting way to connect with our community across the globe on World Duchenne Awareness Day. In your box you will find tools for spreading awareness about Duchenne, Jett Foundation spirit items, tools for participating with us on September 7, and more!
The deadline to order a box was August 14, 2023.
If you would like to purchase WDAD shirts separately from the four (4) that are included in the Individual/Family Awareness Day Boxes, or you are not an individual/family member, please visit the link below.
This year’s shirts bring the global WDAD theme of “Breaking Barriers in Duchenne” to life with our traditional Stronger Than Duchnne slogan breaking through a wall of bricks. The back features the names of individuals living with Duchenne in our community forming the number 79, representing the 79 exons that make up the dystrophin gene. Secure yours today to join us in recognizing this worldwide day dedicated to Duchenne.
The deadline to order additional shirts was August 14, 2023.
Jett Foundation’s World Duchenne Awareness Day events are made possible by the generous support of our sponsors. Instructions for submitting a sponsorship form can be found on the last page of the Sponsorship Kit. For questions regarding sponsorship of our World Duchenne Awareness Day events, please reach out to maura@jettfoundation.org.
How to use Zoom background:
Change your Facebook profile photo in honor of WDAD! Use our Canva template to customize the frame with your personal photo.
How to use the template from a desktop:
How to use the template from a phone:
Download and fill out our WDAD bingo card for a chance to win Jett swag items! Here’s how to play:
Sean and Kyle will be modering our Breaking Barriers Panel Discussion at 12PM ET on September 7. Sean and Kyle are both affected by a rare disease called Friedreich’s ataxia (FA). FA affects their balance and coordination, significantly limiting their physical abilities.
However, both dudes have completed several long-distance bike rides including “The World’s Toughest Bike Race” – Race Across America (RAAM). Their RAAM journey is the subject of an award-winning documentary called The Ataxian .
Kyle rode his trike to the top of the highest paved road in North America and Sean ran with the Olympic Torch.
Together Sean and Kyle host the podcast series, Two Disabled Dudes. Their guests include leaders in the Rare Disease community, Paralympic athletes, notable Psychologists and accomplished public speakers and authors. This podcast is about setting sights beyond the challenges in life and dreaming big, making a plan, and then executing like mad. You are guaranteed an emotional rollercoaster and practical thoughts that apply to many areas of life with this podcast.
Ellen is a mother of two and grandmother to one boy who has Duchenne muscular dystrophy. Ellen is an alum of the Culinary Institute of America in New York and owned a restaurant in Houston, TX for over 30 years cooking Cajun Creole food. She decided to move to Dallas, TX at the beginning of 2023 to help care for her grandson. Ellen loves to read and go to the beach. Her family feels very blessed to have her support.
Sophia is a single mother to her 16-year-old son who was diagnosed with Duchenne at 6 years old. Her life goal is to make sure that he is loved and supported through this life they didn’t expect. She says, “Jett Foundation was one of the first places I started with through their Porch Nites and have really enjoyed the community. I feel that being an ambassador is something in that really suits me. I have always been someone who enjoys helping others and giving them the support they need. I look forward to connecting more to our Duchenne community and learning from all of you and being a support for those who need it.”
Julie Wells earned her undergraduate degree in psychology from the University of Central Florida in Orlando and her Master of Science degree in occupational therapy from Virginia Commonwealth University in Richmond in 2000. She presently serves as Occupational Therapist at Nemours Children’s Hospital in Orlando, which she joined in 2015. Julie has over 10 years of experience in Multidisciplinary Neuromuscular Clinic care. In the Neuromuscular Clinic at NCH, she evaluates fine motor skills, self-care skills, physical performance testing, feeding skills, and needs for skilled therapy services in the community. Julie is also involved in Neuromuscular research for patients with CMT, Duchenne Muscular Dystrophy, and SMA. She is an active member of the American Occupational Therapy Association, Rehabilitation and Engineering Society of North America, International Association of Pediatric Feeding and Swallowing, and the Neuro-Developmental Treatment Association.
Trina was born and raised in a small, rural town in South Louisiana. Two of her three children are impacted by Duchenne. Trina brings a unique perspective to her new position as a mom and caregiver, but also as a patient having been diagnosed as a manifesting carrier/female with dystrophinopathy. As Jett Foundation’s Resource Specialist for Females in Duchenne, Trina will is responsible for managing Jett Foundation’s relationships with females impacted by Duchenne in the community. Her role assists in connecting women with resources and support as well as coordinating programs and events focused for this demographic within our Duchenne community.
Anthony DeVergillo is a motivated communication professional with a focus in the rare disease space. He lives with Duchenne muscular dystrophy, a disease that weakens his muscles over time, but he never lets it stop him from advocating for many who live with a rare disease to be fully included in society.
Ken Nieviera grew up in Taunton, MA, and has lived in Berkley, MA for the past 36 years. He served in the Navy and after being discharged, worked as a hospital carpenter for 44 years until retiring about 9 years ago. He and his wife, Kelley, have been married for 37 years and have a son, Jake (32), who has Duchenne muscular dystrophy. They also have a 42-year-old son, Dave. Ken’s hobbies include woodworking, bike riding on the Cape Cod Canal, and spending time with family and friends.
Jahannaz Dastgir, DO is a pediatric neuromuscular specialist and the clinical development lead of the RGX-202 program at Regenxbio. This program focuses on AAV8 gene therapy for Duchenne Muscular Dystrophy.
To learn more about WDAD and awareness day sponsorship opportunities, please email maura@jettfoundation.org.
Jett Foundation, Inc.
65 Cordage Park Circle
Suite 130 | Plymouth, MA 02360
781-585-5566 | info@jettfoundation.org
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