This page is an Internet presence of a network of parents with children with Nonketotic Hyperglycinemia (NKH), a rare and still incurable metabolic disorder.

The Network's History

Karen Carter and MaryLou Chandler were the first parents who made contact with other parents. The Network was founded in early 1996. Judy Clifford is now preparing and distributing newsletters to the members of the network.

To learn more about NKH, the network, the families, and others, please choose from the items on the left hand side.

News:

02/20/2008: New Message Board. We have a new message board up and running. The new board does require registration to post topics and replies, however it is open for all to read.

You will find the new "Message Board" link to the left. A link to the old message board will be available as well.
 
  03/05/2007: This is a note from Sandy Jarrell, sister of Debbie Taylor who I think has kept in touch with just about all of us! It reads...

Debbie wanted me to send a note to everyone on her list and say - and I quote "that she is still kicking." She said she hadn't heard from anyone as of late and she knows its hard to know what to say when you think someone is terminal. She has had some bad seizures...and is getting around really slow, but as you know she is a survivor!

She told me that this is how we are going to live:
Not looking back with regrets.
Not looking ahead in fear.
Living this day and this moment- for this is the time that God has given us to live.

Do continue to pray for her drop her a note or give her a call....it would make her day. She loves her NKH family...thanks for being there.

Sandy Jarrell ( proud to be Debbie's sister)
  02/01/2007: * * *   NKH FAMILY GET-TOGETHER   * * *

June 22-24, 2007 in Reynoldsburg, Ohio 43068, Days Inn & Suites (2100 Brice Rd, 614-864-1280 or 800-Days Inn) Rooms are $55.00 per night plus tax (single and double beds) reserved under NKH get together

Located directly off I-70, exit 110, North on Brice Rd., 8 miles East of Downtown Columbus Ohio, 10 miles from Port Columbus international Airport

Meet and Greet will be at 6:00 pm on friday with some lite snacks. Dr's, education, equipment presentation on saturday with lunch provided, will go on town for dinner at near by restaurant. Breakfast and NKH business meeting on sunday morning w/ goodbye's

 
  11/18/2006:

 Right in time for your holiday shopping! Hope for NKH is hosting an online & book fundraiser with Pampered Chef. When ordering on the website, type in Hope for NKH under organization. If you would like a book to pass around or have any questions please email Sarah Harris with your name, address, amount of books needed or any questions you may have.

The fundraiser is being held November 18th - December 15th. All orders will be shipped to the individual placing the order. All orders placed by December 15th will be received by December 22nd. If we receive over $600 in sales we will receive 30% profits.
Thank you for supporting Hope for NKH.

 
  11/05/2006:

 Hope for NKH is hosting an online fundraiser with AVON. You can order the items on line. They will be shipped directly to your home.

20% of the proceeds will go the Nonprofit. This campaign ends (12pm EST)November 30th, 2006. Anyone can order from this site so please let all your friends and family know to help our cause.

Thank you for your support.

 
  10/29/2005:

 How to get your name on the internet member list or updated?

Unfortunately there are 2 totally separated lists. The paper version administered by Karen Howser and the web version administered by Michael M�ller. If you want to have your name listed on both lists please contact both of us. Please don't forget to specify all relevant information.

(I am sorry it took a long time to do the last updates. If yours are not on the list as of today please contact me again. Sorry for any inconvenience!)