News
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…
Read MoreSouthport Mum renews appeal for daughter with rare disorder
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…
Read MoreMesa 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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