For the past several years, Jett Foundation has hosted an annual World Duchenne Awareness Day (WDAD) event of celebration and remembrance in the Boston area, the epicenter for rare disease research. Once again we were able to take the opportunity to broaden our celebration beyond our traditional Boston area event and engage with our families and partners all across the country virtually. And, to make things more fun, we shipped out 400 WDAD Party Boxes filled with fun “Stronger Than Duchenne” swag and activities!
We loved seeing everyone get decked out in preparation for our WDAD events, whether it was showing us your best outfit, front yard, or car! In the morning, we kicked off our WDAD Celebration by moving our muscles with a live Zumba workout guided by Judi Perez!
In the afternoon, families got to grow with Jett Foundation by using our herb garden starter kits (a constant reminder that everyday your family grows we are here for you)! At Jett Foundation, we believe strength starts right at home with our families. What better way to come together than around the dinner table? We sent out our Jett cookbook (with yummy recipes from Ambassadors and Jett staff!) to try new recipes as a family and enjoy a meal together. You can still access our cookbook: click here for a PDF of the cookbook.
After having so much fun cooking with the community, we were brought together for an educational webinar with Dr. Han Phan from Rare Disease Research Unit. We were provided updates on Advancements in Drug Development and FDA Approved Therapies in Duchenne, a great reflection of how far we have come and the strides we still have to make.
Last but not least, we got to Soar with Jett’s Camp Promise. We rattled our inner feathers by grabbing our Bird Feeder Making Kit and experiencing the magic of camp with the Camp Promise team members Meghan Houston and Niki Benefiled!
After a fun, jam-packed day we got to unwind from WDAD together. Whether that was wrapping up with dinner inspired by one of our community ambassadors recipes, enjoying family fun night with our custom playing cards, relaxing by listening to a meditation recording led by Andrew Cleaver, or shining a light on Duchenne by using our Candle Making Kit, there were so many ways to end the day.
We were so impressed with the outpouring of support from not only our incredible community of families, but also our Duchenne industry partners who raised awareness alongside us by wearing Stronger Than Duchenne shirts and sharing team photos online.
Thank you to all of our generous sponsors for making this event possible: Ultragenyx, Astellas Gene Therapies, Avidity Biosciences, Dyne Therapeutics, Edgewise Therapeutics, Entrada Therapeutics, FibroGen, Italfarmaco, Pfizer, NS Pharmaceuticals, RegenXBio, Sarepta Therapeutics, Solid Biosciences, Vertex, Antisense Therapeutics, JB’s Keys to DMD, Permobil, Santhera Pharmaceuticals, Stealth Biotherapeutics, and The Assistance Fund.
We had a whole lot of fun together, but also raised a whole lot of awareness for Duchenne and our programs. All funds raised through our awareness week will support the programs and activities our community knows and loves like Camp Promise, Jett Giving Fund, Porch Nites, Family Workshops, and more.
If you joined us, thank you! Your participation is what made this year’s World Duchenne Awareness day amazing and we are already looking forward to celebrating next year!