We’re riding from London to Paris (over 240 miles) to raise funds for research into Nonketotic Hyperglycinemia (NKH). NKH is a rare metabolic disease with no cure and limited treatment options. Only 500 children live with the disease worldwide.
I know Sam and Elly who have a son, Mikaere, who suffers from NKH.
There are so few NKH research projects every pound we raise has a tangible effect on the research that can be done and every pound we raise will have a direct effect on Mikaere's future.
All proceeds will go to Joseph’s Goal as they're UK’s only NKH charity and their donations help fund research by Professor Nick Greene at UCL/Great Ormond St Hospital.
He is developing gene therapy options to provide longer term treatment and so far, his research has had promising results. Nick + Elly have been emailing and in the next stage of research Mikaere's DNA may be used as part of a case study.
More information about Mikaere at www.teammikaere.com and on instagram @teammikaere