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Nancy Feracco, chairperson of the Charlestonarea unite4answers event, introduces this meeting with words of encouragement for those patients, parents, and caregivers as well as tips for advocating for these disorders. She also shares some upcoming local advocacy events such as the unite4answers event program organized through Bobby Jones CSF.

Kaitlyn Esposito, Director of Research and Programs shares an update on the Bobby Jones CSF patient registry and how to stay involved.

Dorothy Poppe, CEO and Executive Director of Bobby Jones CSF, updates the group on how BJCSF's goals wrapped up in 2023 and a look at the Foundation's goals for 2024 including some very important research projects.

Speaker, Dr. Russell "Chip" Norris, shares research updates from the Norris Lab at Medical University of South Carolina (MUSC) regarding hypermobile EhlersDanlos syndrome (hEDS). Dr. Norris is not only a professor and researcher, but someone who cares about creating a better life for those affected by EDS. He and his team set out to identify the hEDS gene hoping to begin to pave a path for better diagnosis and treatment of this debilitating condition.

Dr. Norris looks at what we currently know about EDS, what we are hoping to learn and improve upon such as the definition, clinical care, and education of EDS for the EDS and related disorders community, as well as patient empowerment through advocacy!

This lecture was given at the Medical University of South Carolina on January 18th. (2024)

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