208. “OMG He Has Tay-Sachs?” Transforming Heartbreak into Genetic Advocacy with Shari Ungerleider
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.
Resources Mentioned:
Compatible with Life by Dr. Devorah Schendler
Episode 104. Compatible with Life with Dr. Devorah Schendler
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 programs and screening events. She presents programs and shares her story to show the impact that genetic testing and counseling can have on family planning.
Shari, along with her husband Jeff and father Stanley Michelman founded the Evan Lee Ungerleider Foundation when her son was diagnosed with Tay-Sachs disease. This foundation is part of the National Tay-Sachs and Allied Diseases Association, where she is a past president and served on the board for over 20 years. Shari has four children, Evan (mentioned above), Justin, Leigh and Sydney. She lives in Wayne, NJ with her family.
As a result of Evan’s illness, Shari became an advocate to educate and raise awareness about the importance of carrier screening coupled with genetic counseling. She turned her family’s tragedy into something positive so that others would be spared the suffering they experienced. Shari’s life mission for over 25 years has been to educate and outreach about the importance of genetic screening coupled with genetic counseling.
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