Submitted by Sarah Steel Having been featured in the Liverpool ECHO last year, Sarah Steel, a mother from Southport whose daughter, Isla, suffers from a rare metabolic disorder, is now renewing her daughter’s appeal in an effort to generate funding for scientists to explore gene therapy trials. In 2018, after discovering little Isla’s hands were twitching, Doctors…

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MESA, AZ (3TV/CBS 5) – A Mesa family is hosting a “Zoom the Room” virtual walkathon to raise awareness for NKH and money for gene replacement therapy research, which could be life-saving for their little boy. Click to Watch video of the story on AZ Family. Lucas Culp was diagnosed with NKH, nonketotic hyperglicinemia, when…

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ZoomWalkathon.com Video Conferencing Lucas John Foundation is Actively Working to Save Children with Orphaned Rare Diseases FOR IMMEDIATE RELEASE   May 2020 (Mesa, Arizona) – The family of Brandon and Chancee Culp in Mesa, Arizona, is fighting for the life of their two-year-old son, Lucas John Culp. He was born in 2018 with a rare…

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