- Lakota Smith
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 Mary Lou 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.
NKH International Family Network's goal is to network and connect families by means of this website, newsletter, and member list, assist parents with support, advice and information on how to best care for their child/children with NKH, offer emotional and educational support to each other and to new families.
Annual dues to be used for these goals of $20 are requested, however, any affordable amount is acceptable and no one will be denied if not affordable. All dues/donations can be sent to Judy Clifford.
"We are all only a piece of twine in our lives, but together as our NKH family group, we make a rope of hope, faith, and love for one another to hold onto." -by Rita Williams, mom to Kurt Dalton 9/30/92 to 1/1/01
Mary Lou Chandler/Co-Founder
1401 Ridgefield Avenue
Ocoee, FL 34761
481 Canisteo Street
Hornell, NY 14843
"Aerodynamically the bumblebee should not be able to fly but the bumblebee doesn't know that. So it goes on flying anyway." NKHINFN has recently adopted a new logo using the bumble bee as our mascot. A long time ago one of our NKH moms, Michelle Albeck, suggested we use the bumble bee. The saying is very true for many of our kids with NKH.
NKH International Family Network now has a "sister" organization Hope for NKH. This is a 501 (C)(3) non-profit organization approved by the IRS and incoporated in the state of Washington, USA created to raise funds for research and promote public awareness of NKH and its effects. All donations will be used for this purpose and are tax deductible. For more information Hope for NKH C/O Sarah Harris 19402 74th Ave. E. Spanaway, WA 98387 (253) 219-7535 Hopefornkh@comcast.net or Mary Hickmott, Treasurer at 989-845-4253 or email@example.com on how and where to donate. www.hopefornkh.org