Community Lunch & Learns

Meet the Patients

January 27, 2023 | 12:00 PM CT

People who have received gene or cell therapy treatments, either approved or in clinical trials, have helped further research and have given hope to others who have rare or genetic disorders. This event will highlight their experiences and journeys.

Join us as patients highlight their stories, from navigating the diagnosis process to learning about and receiving investigational treatment options. We'll hear about life after receiving a therapy and patients' outlooks for the future of their disease communities.


Moderator: Kim Nye, president and executive director of the TESS Research Foundation


12-12:05 p.m.

Meet the Patients

12:05-12:40 p.m.


  • Jenn McNary, Co-founder of Canary Advisors, LLC and parent of children who participated in clinical trials

  • Amy Medina, parent of children with SMA

Moderated Q&A

12:40-1:00 p.m.

Thank You to Our Sponsors

Learn about ways to support this program


Register for the 27th Annual Meeting

May 7-11, 2024 | Baltimore, MD

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