For the past several years, Jett Foundation has hosted an annual World Duchenne Awareness Day event of celebration and remembrance in the Boston area, the epicenter for rare disease research. Due to COVID-19, our normal gathering and awareness efforts went completely virtual. And, to make things more fun, we shipped out WDAD Party Boxes filled with fun “Stronger Than Duchenne” swag and activities to over 200 families and community members across 36 states and 2 countries. Each family received access to a whole host of virtual live events and pre-recorded activities during our week-long celebration.
The week kicked off on World Duchenne Awareness Day–September 7–with a special Luminaria Ceremony via Zoom remembering those we have lost and honoring the heroes in our community we fight for daily. Siblings Sam and Lydia Safford sprinkled the ceremony with joy, serenading us with a mix of relaxing and fun tunes. Earlier in the day, we had a surprise for the community–special readings of Dan and DMD by the book’s author, Joseph Yasmeh, Elijah Davila, Jett program participant, AND superstar football player #63 on the San Francisco 49ers, Ben Garland. Watch Ben’s narration here.
Tuesday was Ask the Experts Day! Our industry partners helped pull together cool videos about science and at-home science experiments. We were also joined by Dr. Natalie Truba who talked with us about Duchenne and the brain.
Then came arguably one of the most fun days of our week, Camp Day! Our staff at Camp Promise put together a day full of camp-like activities, including Pops and Socks, where participants experimented with popcorn flavors and tie-dyed socks together virtually. Camp Promise pulled together a group of adult campers from across the country to talk about their professional and personal interests, challenges (and wins!) they experienced in achieving their goals, and ways in which COVID-19 has impacted their day-to-day lives as well as the pursuit of their goals. Their answers may surprise you, listen here!
Thursday brought with it something spicy… HOT SAUCE! We were joined by Connor’s Saucery Executive Chef, Connor Barshay (age 12), for an “Ask the Chef” event and nacho-making tutorial. In 2014, Connor was diagnosed with Duchenne and while it limits him in certain ways, in no way does it affect his passion or creativity in the kitchen. Over the past few years Connor has become particularly enamored with hot sauces, leading him and his family to launch Connor’s Saucery in 2018. Connor and his family put together this awesome video for us, if you missed his event, you’ll want to check this out!
Later that evening, parents came together for a virtual social, similar to our Porch Nite program. Creator of Grace Trail, Anne Jolles, led us through her program focused on gratitude and reflection, and parents had the opportunity to connect with one another and share their experiences.
We wrapped up our week of activities with our Closing Ceremony. At the ceremony, we announced the winners of our Un-Run for Duchenne prizes and presented the Stronger Award to Jett Foundation Community Ambassador and super-mom, Diana Johnson.
We were so impressed with the outpouring of support from not only our incredible community of families, but also our Duchenne industry partners; over 200 employees of pharmaceutical companies in the Duchenne space raised awareness alongside us by wearing Stronger Than Duchenne shirts and sharing team photos online. Many of these companies were also sponsors of our event and were represented on our WDAD Planning Committee this year. Sponsors included Audentes, Casimir, Catabasis, Cumberland Pharmaceuticals, Dyne Therapeutics, Italfarmaco, NS Pharma, Parexel, Pfizer, Santhera, Sarepta, Solid Biosciences, Stealth Biotherapeutics, The Assistance Fund, and Vertex.
We had a whole lot of fun together, but also raised a whole lot of awareness for Duchenne and our programs. Together with sponsorships, Facebook Fundraisers, and donations from the community (including 115 NEW donors to Jett Foundation), we raised over $60,000. Thank you all for your support and belief in our new vision for this event. 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 week so great. We loved seeing all your photos and encourage you to keep sending them our way and tagging us on social media. We are looking forward to next year–where we hope to build off this year’s virtual successes and have the opportunity to gather again in-person.