12:00 Navigating back to school with a child who has a disability
1:00 Understanding gene therapy for babies and young children
For parents of children with disabilities, back to school time can be a mix of excitement and anxiety. They may be navigating complex education plans, arranging for specialized transportation, or making sure the right support staff are in place. For some families, it’s a matter of making sure their child has access to therapies; for others, it’s about fighting for accommodations they’re legally entitled to but don’t always get. And behind those hurdles is concern for whether their child will feel included, safe, and understood in a new school year. Our guests discuss their experiences and what resources are available.
Our guests:
- Shenee Elzey, mother of a child who has holoprosencephaly
- Kara Georgi, family education specialist at Starbridge
- Brentaysia Johnson, parent of a child with disabilities
- Kristen Lopez, communications manager at Starbridge and parent of a child with disabilities
Then in our second hour, a rebroadcast of one of our favorite conversations. When a parent hears their newborn or young child has a genetic condition that could affect the rest of their lives, they may be scared, confused, and have questions about what to do next. Research in gene therapy has led to significant changes in how doctors work with families on those questions.
This hour, we sit down with two local mothers who share their families’ stories of accessing care for their children, and we’re joined by the experts who provide that care.
Our guests:
- Emily Hessney Lynch, parent of a child who received gene therapy
- Kate White, DPT, physical therapist in the Orthopedics Department at the University of Rochester Medical Center, and creator of Team Teddy 5K, an annual fundraiser for Duchenne Muscular Dystrophy research
- Samuel Mackenzie, M.D., Ph.D., assistant professor in the Departments of Neurology, Neuroscience, and Pediatrics; and the Center for Health and Technology at the University of Rochester Medical Center
- Bo Hoon Lee, M.D., assistant professor in the Departments of Pediatrics and Neurology, Child Neurology at the University of Rochester Medical Center
"Connections" is livestreamed each day on the WXXI News YouTube channel. Watch here.
