Virtual Panel: Raise Your Voice for Duchenne

World Duchenne Awareness Day Virtual Panel: Raise Your Voice for Duchenne

Jett Foundation is hosting a virtual panel discussion delving deeper into disability rights and the power of our collective voice within the Duchenne community. This online event will feature a diverse group of experts with both professional and personal experiences relating to advocacy, disability rights, and more.

September 7, 2024 | 5:00PM ET
Virtual Via Zoom

Meet the Moderator

Jill Castle

Jill became a rare disease advocate over 20 years ago when her son Anthony was diagnosed with Duchenne muscular dystrophy. Since then, Jill has spent her professional life in various roles of Education, Behavior and Advocacy. Her experience ranges from being a Special Education Director, a state mediator for dispute resolution, training and compliance, a behaviorist for families and educators, and is currently an adjunct professor at Amy Lou Fulton Teacher’s college at Arizona State university. She holds an M.Ed in Educational Psychology in conjunction with graduate certifications in Positive Behavior Support, Autism, IEP Facilitation and Functional Behavioral Assessments. She has helped parents navigate government programs, health care issues and social services for the state of Arizona while supporting parents nationally on Special Education and Behavioral related issues.

Meet the Panelists

Alan Chaulet

Alan is an Entrepreneur fighting Duchenne muscular dystrophy. He graduated from Bentley University in 2013 with a Management Degree. In College, Alan was heavily involved with the Commuter Association, Literary Society, and Association of Bentley Activities. Since 2014, he has been working alongside the founder as the Vice President of All Wheels Up, the first not-for-profit organization in the world to fund research and development for a “wheelchair spot” on commercial aircraft. The not-for-profit organization is working with airline carriers and aircraft manufacturers to make airplanes wheelchair accessible for the millions of people who depend on them for mobility and safe seating. Alan is very active in the Duchenne muscular dystrophy community and since 2015 has been serving on the Parent Project Muscular Dystrophy Adult Advisory Council representing the voices of adults living with Duchenne and Becker Muscular Dystrophy in PPMD’s legislative, policy, and program activities. Disability Advocacy and Inclusion drives Alan to be a leading voice for what needs to change.

Deb Jenssen

Deb Jenssen is the mother to triplet 15-year-old daughters, two of whom live with Duchenne muscular dystrophy. She lives in Madison, Alabama and has been active in the Duchenne community since Sarah and Megan were diagnosed in 2013. Deb is passionate about raising awareness that girls can and do have Duchenne, and therefore should have equal access to medical care and drug trials. She serves as the Alabama Connect Coordinator for Parent Project Muscular Dystrophy and participates in as many advocacy opportunities as she can.

There's more!

Check out all of the Jett Foundation’s World Duchenne Awareness Day activities and engagement opportunities by visiting our main WDAD page at jettfoundation.org/wdad.