Notre Dame Day 2020

Donate to the Boler-Parseghian Center for Rare Disease in support of NKH Research. Make a minimum donation of $10 to cast your “Vote” for the NKH Research project to win a scholarship for NKH Research at Notre Dame. About ND Day:We are excited to come together once again for a special celebration of the University…

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Mesa family hosting virtual walkathon for NKH awareness

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 Launched for Fundraising for Rare Disease

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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