About this episode

Shari Ungerleider shares her journey as a mother navigating her son's Tay-Sachs diagnosis and her transformation into a genetic advocate.

In this episode, Dr. Baron sits down with Shari Ungerleider, Senior Manager and Head of Education and Outreach for jscreen , to share her journey as a mother to her son Evan, who was diagnosed with Tay-Sachs disease. Her story illuminates the power of love, resilience, and the importance of genetic awareness and education. Shari shares the story of her son life, from missed milestones to his diagnosis at 13 months old. Following expert advice, they pivoted from chasing experimental cures to creating a lifetime of memories, focusing on comfort and love. She discusses the emotions that go alongside a diagnosis, the choices around family planning, and how she turned loss into advocacy and education to help others. If you are navigating the realities of medical diagnoses or carrying the memory of a child who has passed, this episode is for you. About Shari Ungerleider: Shari Ungerleider is a Senior Manager and Head of Education and Outreach for jscreen , a non-profit organization dedicated to saving lives through genetic screening and education. In this role, Shari partners with educational institutions, religious and community organizations and advocacy groups to provide education…

People in this episode

Host: Dr. Aimee Baron

Guest: Shari Ungerleider

Topics covered

• genetic advocacy
• Tay-Sachs disease
• family planning
• medical diagnosis
• education
• resilience

Keywords

• Tay-Sachs
• genetic screening
• advocacy
• family planning
• medical diagnosis
• education
• resilience

Mentioned in this episode

Organizations: jscreen, Evan Lee Ungerleider Foundation

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