Episode 63- The People Behind the People: Family Caregiving, Policy, and the Power of Showing Up

Carlee Weber

Carlee Weber is a 24-year-old woman living her dream. Since she was a little girl she had big plans for her future, but those plans got bolder as her confidence grew. She attended college at Pennsylvania State University, obtaining her bachelor’s degree in public relations. While there, she joined a sorority, volunteered to help kids and families experiencing childhood cancer, and fought for more equitable access for students with disabilities. This sparked an interest in law, fueling her to apply to law school. Carlee just finished her second year of law school at the University of Pittsburgh, School of Law. She lives with her boyfriend and loves snuggling with her chocolate lab, Magenta. 

Connect with Carlee: 

Instagram – https://www.instagram.com/carleewithtwoes?igsh=MTUyNXlscXRxaHJrZg%3D%3D&utm_source=qr

Tiktok- https://www.tiktok.com/@carleewithtwoes?_r=1&_t=ZP-95tmFvRZGJD

Nicole Lucas

Nicole Lucas is a dedicated wife, mother, and grandmother. She began her career in dental hygiene in 2001 after graduating from the Pennsylvania College of Technology. She is a compassionate Dental Professional who treasures the bonds she has created with her patients and the community. Her path to becoming a family caregiver started when her youngest child was diagnosed with SMA at the age of 20 months. This was a role she took on with determination and love, always seeking to give Carlee the same life she provided for her other children. It has been an incredibly challenging yet rewarding role to watch her daughter reach heights that she never could have dreamed of for her.  Nicole travels frequently between her home in Williamsport, PA and Pittsburgh, PA to support Carlee’s needs as she attends law school there.  She has recently become more active in the advocacy efforts of the neuromuscular disease and disability community, attending MDA ‘s Hill Day at the Capitol in 2025 and becoming an active member of the MDA Advocacy Team. Nicole enjoys traveling with her husband, who recently retired as a career firefighter and chief.  She also leans heavily on her large support system and family at home.  

Shannon Wood

Shannon Wood joined MDA in 2024 as Director of Disability Policy, where she works to ensure that members of the neuromuscular community can learn, work, travel and socialize without discrimination by advancing policies that maximize our community’s access to key programs and services. Prior to joining MDA, Shannon served as Director of Advocacy and Policy at the National Multiple Sclerosis Society, where she advocated on health and disability policy issues impacting people affected by MS. She also brings experience from previous state and federal advocacy roles with the American Psychological Association.

Connect with Shannon: 

LinkedIn – https://www.linkedin.com/in/shannonwoodvcu/

MDA Advocacy Team – advocacy@mdausa.org

Host: Mindy Henderson

Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment,  Editor-in-Chief of Quest Media, and the host of this podcast.  She was diagnosed with spinal muscular atrophy (SMA) type 2, when she was 15 months old and has been a life-long partner to MDA.  Mindy is also a professional speaker and author of the book, The Truth About Things That Suck.

Connect with Mindy: 

LinkedIn: https://www.linkedin.com/in/hendersonmindy/     

Instagram: https://www.instagram.com/mindyhendersonspeaks/