Jett Foundation Hosts Eighth Annual World Duchenne Awareness Day Events

September 14, 2023

Each year on September 7, Jett Foundation hosts events to recognize World Duchenne Awareness Day (WDAD) with the Duchenne community. This year, Jett brought awareness, spirit, and creativity to the homes and buildings of our Duchenne community through Awareness Boxes and virtual events. Boxes were filled with items such as red Jett decorations, WDAD tee shirts, a Stronger than Duchenne flag, and much more.

As tradition, Jett kicked the day off with a Welcome Message from Executive Director Eric Snyder, which can be viewed on our YouTube Channel. Eric speaks on the importance of World Duchenne Awareness Day, how to get involved, raising awareness in your own community, and more.

To recognize this year’s global WDAD theme of Breaking Barriers in Duchenne, Jett Foundation hosted a Breaking Barriers Panel Discussion during the afternoon of September 7. Moderated by the Two Disabled Dudes, this panel involved members from the Duchenne community who spoke on the ways they are breaking barriers in access to care and identified areas that still need improvement. Special thank you to our moderators, Sean Bryant and Kyle Baumstark, and our panelists, Trina Stelly, Anthony DeVergillo, March Schmertmann, Ken and Jake Nieviera, and Naz Dastgir.

At 5pm ET, our community joined us for Adaptive Demonstrations. Participants chose between two sessions that happened simultaneously: cooking at home or adaptations for independent living. Our friends learned to make a non-bake Cereal Treat from Sophia Flynn, who is a Jett Community Ambassador, and her mother Ellen (check out our toolkit for the recipe!). At our adaptations for independent living session, Julie Wells, an Occupational Therapist from Nemours Children’s Hospital in Orlando, showed participants how to best utilize items in their home to make their days accessible, and offered tips on items and configurations that can be used for accessible adaptations.

To close the day, Jett Foundation hosted a virtual Luminaria Ceremony to honor our community. Individuals and families from across the globe grabbed their luminaria bags provided in Awareness Boxes, wrote the names of individuals they would like to honor, and gave them light through candles and glow sticks. A recording of the ceremony can be found here.

Jett’s Director of Programs, Alexa Tinsley, says, “We are very happy with the turnout and programming during this year’s WDAD events. Awareness Boxes, virtual events, and social media activities helped our community grasp this year’s global theme of Breaking Down Barriers and we are very grateful to all who joined us, supported us, and helped raise awareness in communities across the world on September 7. The Jett team looks forward to raising awareness with our community again during WDAD in 2024.”

Our 2023 WDAD events would not be possible without the many individuals, families, partners, and sponsors in our community. Thank you all for your support!

You can view a photo/video montage of our community during WDAD here.

Experience the magic this summer!

How is the rare disease community accomplishing goals?

Tune in on February 29 to hear from our panel and moderators on how they are accomplishing goals and living life to the fullest!

Your gift helps Jett Foundation provide programming and opportunities, such as Camp Promise, to many families impacted by Duchenne muscular dystrophy each year.

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