Zohreh Talebizadeh, Ph.D., Serves on Plenary Panel Session at Gatlinburg Conference

May 6, 2024

Zohreh Talebizadeh, Ph.D.

Zohreh Talebizadeh, Ph.D., Senior Director of the RARE-X Research Program for Global Genes, served on the Association of University Centers on Disabilities (AUDC) plenary panel session “Raising a CHAMP-ion: Community-Engaged Strategies to Tackle a Rare Genetic Neurodevelopmental Disability”, and participated in the career award ceremony. 

The session focused on wins and challenges from the grassroots efforts of a non-profit patient research and advocacy organization, the CHAMP1 Foundation. The panelists talked about how the shared vision and collaboration of the families and those diagnosed with the condition can drive meaningful change. Zohreh specifically discussed Global Genes’ RARE-X research program, and her role in empowering patients and community advocates in rare genetic disability research and clinical landscape.

The other speakers for this panel included Jeff D’Angelo, Founder and President of the CHAMP1 Foundation, and JJ’s Father, and Rodney Samaco, Ph.D., Chief Strategy and Business Development Officer, AUCD. The session was moderated by Sara Weir, M.S., Executive Director of the Kansas Council on Developmental Disabilities. Since 1967, The Gatlinburg Conference on Research and Theory in Intellectual and Developmental Disabilities gathers behavioral scientists to discuss research and collaborations in the field. 

Rodney Samaco, Zohreh Talebizadeh, Jeff DAngelo, Sara Hart Weir, and John Tschida

The conference guide noted: This session builds upon the power of storytelling and the stories shared during the first Community Engagement Panel in the 2023 55th Annual Gatlinburg Conference entitled “What’s Your Why – on the significance of meaningful community partnerships in the research enterprise” with invited speakers Effie Parks, host of Once Upon a Gene podcast and CTNNB1 Connect and Cure; and Parvathy Raman Krishnan, from the Krishnan Family Foundation; and moderated by Rodney Samaco. Both Parks and Krishnan are former Global Genes staff members.

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