From October 24-25, Jett Foundation hosted its final family workshops of 2026 in New York, welcoming families to White Plains and Harlem. Attendees had the opportunity to hear from local experts, connect with other families, and learn more about Duchenne care and treatment.
The first workshop kicked off at the Sonesta Hotel in White Plains, where families had time to enjoy breakfast and get to
know one another before hearing from the day’s guest speakers.
Throughout the day, medical professionals shared their expertise on topics that matter to families at every stage of their Duchenne journey, including quality of life, navigating transitions in care, and advocating for children within the school system. Guest speakers included Dennis Keselman, a pediatric neuromuscular neurologist; Leslie Delfiner, a physician specializing in pediatric neurology and neuromuscular medicine; and Sarah Norris, a physician specializing in pediatrics and hospice and palliative medicine.
Attendees also heard from Kathleen Capitulo, president of the Fairy Godmother Foundation of New York, who introduced the organization and shared stories of the children and young adults they’ve served, along with some of the dreams they’ve helped grant.
The following day, families gathered at the Renaissance Hotel in Harlem for another workshop featuring many of the same topics, with a new lineup of guest speakers. Sarah Norris returned alongside Aaron Zelikovich, a neuromuscular-trained neurologist, and Carla Zingariello, a pediatric neuromuscular neurologist.
The Harlem workshop also included a special opportunity to hear directly from a fellow Duchenne parent. Manuela Villa, a mother to a 7-year-old with Duchenne, shared her family’s experience, including the questions, challenges, and emotions that can come with a diagnosis.
“As a family, we hadn’t found the courage to connect with other families just yet and this year that changed for us. We felt ready,” Manuela said. “It was an honor for me to share our story at the workshop, and it feels like an incredible blessing.”
Representatives from several pharmaceutical companies attended as well to talk with families about ongoing clinical trials, approved treatments, and emerging therapies. Attendees could ask questions and hear more about the research currently underway. Companies represented across the two workshops included Catalyst, Dyne Therapeutics, ITF Therapeutics, Novartis, NS Pharma, Precision Biosciences, REGENXBIO, Sarepta Therapeutics, Servier Pharmaceuticals, and Upsher-Smith.
For Kevin Kennedy, who attended the White Plains workshop with his wife, the day offered a new sense of optimism about what lies ahead.
“The one thing I’ll take away is the optimistic trajectory that’s going on. I think from an education standpoint, we’ve never been in a better place…” Kevin said. “The amount of folks here telling their stories, the amount of clinical trials going on, it’s a brutal diagnosis, but I think people can confidently say for the first time, there’s a lot to be optimistic about.”
Some of the most meaningful moments of the workshops happened between sessions. Whether sharing a meal, swapping stories, or simply getting to know another family who understands the Duchenne journey, attendees had plenty of opportunities to build relationships and remind each other that they aren’t navigating this alone.
That sense of community stood out to Glenn Wringington, a representative from ITF Therapeutics who attended his first Jett Foundation family workshop. For Glenn, the experience was a chance to meet families face to face and get to know them outside of the usual conversations about treatment.
“The workshops are fantastic because families that come get to interact with one another. So it’s not just going and listening to providers speak or industries speak, it’s really getting that sense of community that they’re not alone and they can meet other families and learn some tips and tricks on how they’re navigating life living with Duchenne,” Glenn said. “It also gives them an opportunity to talk to some of the providers that might not have a chance to interact with on a daily basis. It’s great for them to be able to come up and have a conversation with us, outside of what type of therapies we offer.”
Thank you to everyone who joined us in New York! To the families who attended, we hope you left with helpful information, new resources, and greater confidence in advocating for yourself and your loved ones.
We’re also grateful to our 2026 Family Workshop sponsors: Catalyst, ITF Therapeutics, NS Pharma, Sarepta Therapeutics, Avidity, Dyne, Edgewise, Elixirgen, Entrada, Precision Biosciences, REGENXBIO, Secretome, Solid Biosciences, Upsher-Smith, and Wave. Your generosity allows us to continue creating meaningful educational opportunities for families across the country.
Missed the workshops or want to revisit a presentation? A recording of the White Plains, New York, workshop presentations is available on our YouTube channel here. The Harlem, New York, workshop presentations will be available to watch soon.
Be sure to check out our photo albums on Facebook for a look back at the families, speakers, and moments that made each day special. View the White Plains photo album here and the Harlem photo album here.
Stay tuned for announcements about next year’s family workshop locations!
You can help us to support families in the Duchenne community! Donate today or learn more about becoming a sponsor of our direct service programs by emailing [email protected].
