Volunteers

Kali Worth

Kali Worth has a Bachelor of Science in Nursing. Her nursing experience includes working in a hospital, office, and school setting. She now works full time in human resources. Kali and her husband LJ have two children: Kailyn and Keanu. Their family resides in southeastern North Carolina. They enjoy spending time outdoors together as a family, especially at the beach.

Kailyn was diagnosed with Syngap in December 2019. Upon connecting with members of the SRF team, Kali felt that her family had found their syngap home and quickly became eager to volunteer.

Kali recently shared her daughter’s story and how her family is navigating life after a SYNGAP1 diagnosis:

Kali has also written two blogs for SRF: 

Life with a Rare Child: The Journey Beyond the Syngap Diagnosis - Reflection

Long Term Planning for SYNGAP1 Patients: It's never too soon


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