After four years of hosting World Duchenne Awareness Day events in a virtual setting, Jett Foundation reconnected with the community in person on September 7, 2024 during a luncheon and family event. Jett also hosted an evening panel, Raise Your Voice for Duchenne, that featured a diverse group of experts with both professional and personal experiences relating to advocacy, disability rights, and more.
Jett Foundation also distributed 255 awareness boxes and over 1200 t-shirts across the community to help families spread awareness and show their Stronger Than Duchenne pride from home. Boxes included items such as window clings, pinwheels, light up bracelets, megaphone keychain, and more.
The luncheon was held at Boston Quincy Marriott from 11am-2pm and included fun family activities, lunch, a keynote speaker, group t-shirt pictures, photo booth, and more. One hundred and forty-two community members attended, including individuals living with Duchenne, their families, pharmaceutical representatives, medical professionals, the entire Jett Foundation staff, Jett Foundation board members, and many more.
We were delighted to hear from Sam Safford during our keynote portion of the afternoon. Sam addressed messages related to hope, empowerment, advocacy, accessibility, and empowerment. “We must create a world where accommodations are no longer seen as exceptions, but as standard features of our shared spaces” said Sam. “Supports being put in place are important, but they are not what make people have kind attitudes. We may not change every person’s perspective, but what we can do is challenge their outlooks.”
You can listen to Sam’s keynote presentation by clicking here.
The evening brought the community a virtual panel discussion, Raise Your Voice for Duchenne. This panel sought to dive deeper into disability rights and the power of our collective voice within the Duchenne community.
Deb Jenssen is the mother to triplet 15-year-old girls, two of whom live with Duchenne muscular dystrophy. During our panel, she shared, “We have a community with people of all different talents, and it’s amazing if we work together, it’s amazing what we can achieve. Being loud and raising our voices, letting state representatives know our needs aren’t being met, and any reasonable person is going to listen.”
Check out a recording of our Raise Your Voice for Duchenne panel!
Many pictures of our day can also be viewed on Jett Foundation’s Facebook Album.
The success of this year’s World Duchenne Awareness Day events would not have been possible without the support and generosity of our community and sponsors. We are very grateful to those who continue to share the importance of Jett Foundation’s connectivity with the community, particularly at our annual Awareness Day events.
We look forward to many more years of World Duchenne Awareness Day events in order to grow awareness and reach across the globe for Duchenne muscular dystrophy.
If you are interested in supporting our efforts in assisting families impacted by Duchenne, you can donate today or email [email protected] to learn how to get involved.
