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Bazaarvoice Munich

BV Munich 127k Run & Walk for NKH

BV Munich team are walking along the Isar for Joseph's Goal because we want to raise funds for NKH research.

77 %
€974.46
raised of €1,250 target
by 15 supporters
Donate
  • Event: BV Walk for NKH, 29 Sep 2017 to 27 Oct 2017

Joseph's Goal

Joseph Michael Kendrick is 7 years old and has Non-Ketotic Hyperglycinemia, a rare genetic disorder that affects one in 60,000 new-borns. The condition is so serious that less than 500 people in the world are living with it. Joseph’s Goal has been set up to raise funds and awareness into NKH.

Charity Registration No. 1151548

Story

127 km are just over 78 miles. Bazaarvoice Munich team will run, walk & stride along the Isar River for NKH! 

It’s a challenge, but we know we can do it with your help! Please sponsor our BV runners & walkers - for every miles

This is the story of Miakere (Kai):

Mikaere Grant Hulance was born last October with Nonketotic Hyperglycinemia (NKH). It’s a rare metabolic disease with no cure and limited treatment options. Only 500 children live with the disease worldwide.

With NKH Kai suffers from frequent seizures and since his birth, we've been in and out of the hospital and even in hospice on an end of life care plan. It is a terminal condition and we’re unsure how long he’ll live. 

We’re raising funds for NKH research. There are so few NKH research projects every pound we raise has a tangible effect on the research that can be done and every euro we raise will have a direct effect on Mikaere's future. #dontStopBelieving

We support 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. 

In late September, Bazaarvoice is planning a month-long rund and trek along Munich's River Isar to help us raise money for Joseph's Goal and NKH research. 

Join us for a walk during the Bazaarvoice b:generous month, and please donate if you're able.

With sincere thanks, 

Bazaarvoice Munich

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