Registration for 2022 WDAD Awareness Boxes and additional shirts has closed.
Though box registration is closed, we would love to still celebrate with you on September 7! Everyone is welcome to attend all WDAD events, whether you purchased an Awareness Box or not.
We do still have inventory for WDAD Awareness Boxes, but shirts are sold out at this time. If you are interested in purchasing a box, please reach out to alexa@jettfoundation.org.
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 all day on WDAD. These individuals will be carriers of Duchenne, Duchenne moms, family members, clinicians, healthcare providers, and more.
9:00AM ET / 8:00AM CT- Welcome 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 discussion will feature women carriers, women caregivers, and women in the clinical care setting
sharing their experience with the community. Join us to learn about their experiences and their insight into Duchenne. Please register ahead of time to receive the Zoom link!
4:00PM ET / 3:00PM CT – Dancing for Duchenne
Hulda Björk is a wife and mother of three children, one with Duchenne. She and her son, Ægir Þór, started Dancing for Duchenne to raise awareness and bring joy to those across the world. Join us for a quick dance session with Hulda, her family, the Jett team, and so many others across the nation and the world! Please register ahead of time to receive the Zoom link!
8:00PM ET / 7:00PM CT – Trivia Game
In this Jeopardy-style, interactive trivia game we will form two teams of four individuals who all come from different areas in the Duchenne space to test their knowledge on Duchenne, pop culture, and more! Teams will include individuals with Duchenne, family members, clinicians, and Patient Advocates. If you filled out the interest form by August 29, we will be drawing team members from randomized lists of submissions, and we will reach out if you are selected.
10:00PM ET / 9:00PM CT – Closing Photos
Photo montage consisting of photos from the entire Duchenne community who helped us celebrate and raise awareness throughout the day! Submit your photos for a chance to be featured!
Mindy Cameron – Facilitator, Speaker Panel
Patient Advocate and Government Affairs Consultant, Biotech & Life Science Industries
Mindy Cameron has worked in the Duchenne muscular dystrophy community for 18 years in a variety of roles in the non-profit, research, and industry sectors. She is the mother of two sons, one of whom is a 21-year-old college student who lives with Duchenne. Currently, Mindy works as a patient advocacy and government affairs consultant in the biotech and life science industries.
Mindy lives in Carmel, Indiana where she serves as a board director for the Muscular Dystrophy Family Foundation and a member of the City Council’s Committee on Disability. Mindy was an original board member for Remember the Girls, a non-profit organization advocating on behalf of females affected by X-linked genetic disorders.
Migvis Monduy, MD – Speaker Panel
Division Chief of Pediatric Neurology, Nemours Children’s Hospital
Migvis Monduy, MD, is the Director of the Neuromuscular Program at Nicklaus Children’s Hospital in Miami, FL. She was previously division chief of pediatric neurology at Nemours Children’s Hospital in Orlando and director of the MDA Clinic. Prior to joining Nemours, she also led the Neuromuscular Disorders Program and directed the Gait Analysis Lab at Nicklaus for a decade. She has participated in numerous clinical trials for Duchenne Muscular Dystrophy and Spinal Muscular Atrophy as Principal Investigator.
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 fluent in English and Spanish.
Trina Stelly – Speaker Panel
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.
Diana Johnson – Speaker Panel
Family Impacted by Duchenne & Jett Foundation Ambassador
Diana attended her first Jett Foundation event in January of 2018 shortly after her son Jordan’s Duchenne diagnosis in December of 2017. As a Community Ambassador, Diana has hosted several fundraising events in her home state of Connecticut including trivia nights and fitness competitions at a local gym, as well as charity hockey games through the Connecticut Chiefs.
Diana has also served on Jett Foundation’s WDAD committee and spoken at Rare Disease Day and Family Workshops. Diana and her husband Jordan (senior) share 3 kids: Jordan (8), Layla (6), and Julian (4), along with a rescue dog, Josie and cat, Mr. Rosie. Diana has a master’s degree in Psychology and works in Reproductive Medicine as a Human Resources Director for a fertility company. When Jordan was first diagnosed, Diana had never heard of Duchenne muscular dystrophy and through Jett Foundation, gained significant resources and education. She is passionate about bringing awareness to Duchenne and supporting newly diagnosed families.
Hulda Björk – Dancing for Duchenne
Family Impacted by Duchenne & Dance Facilitator
Hulda Björk is a mother of three children from Iceland. Her youngest son, Ægir Þór, was diagnosed with Duchenne in June of 2016. Recovering from the initial grief, Hulda decided to start raising awareness and helping others by sharing her journey. Hulda and her son have always loved dancing, and one day decided to record their dancing to post on social media. That’s how they created Friday Fun – Dancing for Duchenne! They have danced with friends, family, famous artists in Iceland, nonprofit Duchenne organizations, the Prime Minister of Iceland, other Duchenne families, world class athletes, and many more. They dance to raise awareness, spread joy, and to share hope.
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
- WDAD2022
Profile Picture Frame
Customize your Facebook profile photo with our Stronger than Duchenne frame! Use our Canva template or download the frame image to use in the editor of your choice.
Jett Foundation’s Logos
