September 7 | Jett Foundation’s World Duchenne Awareness Day Celebration
All Day on September 7 – Women in Duchenne
We will be recognizing and celebrating some of the women warriors in our Duchenne community via social media. To submit a nomination for someone who has made a difference in a Duchenne journey, please fill out this form by August 29. These individuals can be carriers of Duchenne, Duchenne moms, family members, clinicians, healthcare providers, and more.
9:00AM ET / 8:00AM CT- Welcome to WDAD Message
Stay tuned on social media for a video message from Jett Foundation’s Executive Director Eric Snyder who will get us ready for WDAD and share ways you can get involved this year!
12:00PM ET / 11:00AM CT – Women in Duchenne Panel Discussion
This panel will feature female Duchenne carriers, women caregivers, and women in the clinical care setting that will share their experiences!
4:00PM ET / 3:00PM CT – Dancing for Duchenne
Get your dancing shoes ready as Hulda Björk joins us from Iceland to share her dancing movement that has spread all over the world!
8:00PM ET / 7:00PM CT – Triva Game
In this Jeopardy-style, interactive trivia game we will form two teams of four individuals who come from a different area in the Duchenne space to test their knowledge on Duchenne, pop culture, and more! If you are an individual with Duchenne, family member, clinician, or Patient Advocate (including our Pharmaceutical partners), please sign up by August 29! We will be drawing team members from randomized lists of submissions, and we will reach out if you are selected.
Migvis Monduy, MD
Division Chief of Pediatric Neurology, Nemours Children’s Hospital
Dr. Monduy joined Nemours Children’s Hospital in 2020 after caring for children in South Florida and leading the region’s Pediatric Movement Disorders Program for nearly a decade. Prior to joining Nemours, she also led the Neuromuscular Disorders Program and directed the Gait Analysis Lab.
Dr. Monduy graduated from the University of South Florida College of Medicine. She completed her residency in pediatrics and her specialty training in child neurology at Texas Children’s Hospital in Houston. Dr. Monduy is board-certified in neurology with special qualifications in child neurology. She is also board-certified in brain injury medicine and specializes in neuromuscular and movement disorders. She is also fluent in English and Spanish.
Trina Stelly
Duchenne Carrier & Jett Foundation Ambassador
Trina is very thankful for the support of families in the Duchenne community that have helped during her family’s long Duchenne journey. Also a carrier of Duchenne, Trina is determined to help more than just her children who have Duchenne. She is passionate about carrier issues and raising awareness for females with dystrophinopathies.
“Losing our son to Duchenne was devastating, and due to being a manifesting carrier we will continue to have to deal with the challenges it brings and I am not going to just walk away. I’m here for the long haul and to fight,” says Trina. In addition to being a mom and an advocate, Trina enjoys being a wife of over 21 years and running the family farm.
These tools and resources will help you spread the word in your local community about WDAD, Duchenne, and Jett Foundation. Below we have shared our logos, graphics, social media platforms, and hashtags. We have also included some sample language to use when speaking about Jett Foundation’s World Duchenne Awareness Day event and Duchenne as a whole.
Jett Foundation’s 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.
Shareable Graphics:
Click below to download and share WDAD and Stronger Than Duchenne graphics as you drum up excitement for September 7 amongst your family, friends, colleagues, and community!
Sample “Spread the Word” post to pair with any Jett Foundation graphic:
“Jett Foundation is hosting their 7th Annual World Duchenne Awareness Day event on September 7, 2022!
Register to get the celebration at your door with WDAD Awareness Boxes. Each WDAD Awareness Box includes many items for activities scheduled throughout the day on September 7, festive decor, swag items, and more. Join the celebration and register now at jettfoundation.org/wdad.
Sample “Show Your Support” post to pair with any Jett Foundation Graphic:
“This year, [I/we/company name] [am/are/is}] joining Jett Foundation to celebrate World Duchenne Awareness Day on September 7.
Duchenne muscular dystrophy has no cure, but there is lots of hope. That is why {I/we} urge you to join us to raise awareness, celebrate advances in Duchenne research, and acknowledge challenges still to come. We are Stronger Than Duchenne together. Visit jettfoundation.org/wdad for ways to get involved!”
How to Change Your Zoom Background for WDAD >>
Click the graphic to download and add our Zoom background before the event!
Jett’s Links & Resources:
Jett Foundation’s Social Handles
Jett Foundation’s Hashtags
- #StrongerThanDuchenne
- #JettFoundationWDAD
Jett Foundation’s Logos
