Madi's Mission to Find a Cure for NKH

Most of you know about the tragedy Kari and I experienced in May with the loss of our dear Madison.  Madi was diagnosed with a severe and incurable metabolic disorder called Nonketotic Hyperglycinemia, or NKH for short.  NKH affects one in 60,000 babies and there is an estimated 500 children living with NKH worldwide.  We have struggled over the last few months since Madi’s passing and we continue to search for information on NKH to determine what the future holds for our family and if we’ll be able to have any more children.  What we do know is information is limited and that we have a one in four chance of having another baby with severe form NKH.

There is limited research regarding NKH and funding for research is done through grassroots efforts by families affected by this genetic disorder. Through our research, we have discovered a doctor with the University of Colorado-Denver, who is one of very few experts on NKH world-wide, and is currently conducting research to find a cure for this disorder. His name is Dr. Johan Van Hove and we've had the opportunity to speak with him about NKH and the results of Madi's test results.

We are going to do whatever we can to help Dr. Van Hove find a cure so no family will ever have to endure what we’ve experienced and help find a cure for those who have living children with NKH.  This is what Madison would want us to do in her honor – this is Madi’s Mission. 

We will be raising money and hand delivering a check to Dr. Van Hove for 100% of the proceeds we raise.  In October, we will be attending an NKH conference and fundraiser in Boston and delivering the check to Dr. Van Hove at the event.  Here are a few ways you can help support Madi's Mission:

- Make a donation here (GoFundMe requires a $5 minimum)
- Donate something for the NKH Silent Auction in Boston on October 3rd (contact Chris or Kari for details)
- Purchase a $2 bracelet from Chris or Kari to support Madi’s Mission (please note that we’ll send you a bracelet for any donation you make toward Madi’s Mission)

[email redacted]
[email redacted]

References
http://www.ucdenver.edu/academics/colleges/medicalschool/departments/pediatrics/people/bios/Pages/vanhove,%20johan.aspx

http://www.nkhcrusaders.com/Pages/default.aspx

http://en.wikipedia.org/wiki/Glycine_encephalopathy

http://www.nkh-network.org/whatisnkh
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Organizer

Chris Pritchett 
Organizer
Oswego, IL
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