Recap: Jett Foundation’s Seventh Annual World Duchenne Awareness Day Celebration

September 14, 2022

On September 7, 2022, Jett Foundation hosted its seventh annual World Duchenne Awareness Day (WDAD) celebration to recognize those in the Duchenne community. To bring awareness, fundraising, and joy into the homes and offices of our community, Jett Foundation offered WDAD Awareness Boxes that included items for participating online, raising awareness for Duchenne, and showing Jett Foundation spirit.

The day started with a Welcome Message video from Executive Director Eric Snyder who spoke about the importance of September 7, how to participate throughout the day, and how we will recognize this year’s global theme of Women and Duchenne.

“Jett Foundation’s World Duchenne Awareness Day celebration is very important for being able to broaden our reach nationally and globally. This year was particularly special as we implemented the global 2022 WDAD theme of Women and Duchenne into the day’s activities and social media activity,” says Eric. “I am beyond grateful that so many members of our community joined us on September 7 to help celebrate, recognize, and raise awareness for Duchenne. We already cannot wait for next year.”

Our first interactive event of the day was a Women in Duchenne panel discussion, which featured women carriers, women caregivers, and women in the clinical care setting sharing their experiences. Speakers included: Dr. Migvis Monduy, Director of the Neuromuscular Program at Nicklaus Children’s Hospital; Trina Stelly, a Duchenne carrier, mother to a family impacted by Duchenne, and Jett Foundation Ambassador; and Diana Johnson, a mother to three children, one with Duchenne, and Jett Foundation Ambassador.

The panel was facilitated by Mindy Cameron, a Duchenne carrier, long-time Patient Advocate, and the mother of an individual who lives with Duchenne. Mindy says, “Every day, we hear of Duchenne being a disease that affects males. I think we are all trying to move away from that strict definition. The fact that there are now dedicated clinics for women like us has been really significant.”

On the topic of raising awareness about both male and female Duchenne carriers, Trina Stelly shared, “When I started doing more research, I found that there were other women showing my same signs and symptoms. I try to participate in as many research studies as possible so that we can find out the answers to our questions. As hard as it is, [females] need to take the time to look into themselves.”

A recording of the panel can be viewed here.

To honor and celebrate some of the women warriors in our Duchenne community, we blasted out a Women in Duchenne Facebook album during our day of celebration. Nominations came in for carriers of Duchenne, mothers, family members, clinicians, patient advocates, healthcare providers, and more. Thank you to all of the women in our community for everything you do for Duchenne! To view the album, please click here.

In the afternoon, the Jett Foundation team got up out of their chairs to dance with the community in our Dancing for Duchenne event. Facilitated by Hulda Björk and her son, Ægir Þór, this dancing session was one of many global stops that the duo has made to raise awareness for Duchenne muscular dystrophy.

Hulda says, “Having a son with Duchenne, I wanted to do something good. I needed to have a purpose and meaning to all of this, so I started advocating and doing little things on social media. One day, we posted a dancing video. It became a big thing, and now we are Dancing for Duchenne!”

You can view a recording of the Dancing for Duchenne event here.

The community’s energy stayed high through the evening as we concluded our day with an interactive trivia game. Containing two teams comprised of individuals who all come from different areas in the Duchenne space, this game brought a fun and competitive battle of answering miscellaneous trivia questions about Duchenne and pop culture. Congratulations to the Red team for taking the win!

You can watch the Red versus White team trivia replay here.

Our 2022 WDAD celebration would not be possible without the many individuals, families, partners, and sponsors in our community. We can’t thank you enough for your participation!

A video montage recap can be viewed here, or view the complete WDAD photo album here!

Thank you to the following generous sponsors who made this day possible:

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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