In order to continue moving the NKH International Family Network forward, it is important that we raise funds to support our needs. If you or your relatives would like to donate some money - or even a gift card to an office supply store - you are more than welcome.
Perhaps you want to follow Karens example: She and her husband did a big party for Jennifer's 16th Birthday and the invitation read: in lieu of gifts, Jennifer asks that you make a donation to the NKH Family Network.
NKH - CU Foundation, NKH Crusaders
University of Colorado Foundations
Attentions : Allison Haley
13001 East 17th Place
Mail Stop A065
Aurora, CO 80045
All checks have to be made out to "Foundation, NKH Crusaders: Fund #0223311"
Donations do NOT have to be in US funds only.
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
You also can support research on NKH
Prof. Johan Van Hove wrote:
Since arriving in Denver in July 2003, the NKH laboratory has developed the analysis of the genes associated with NKH to be used for diagnosis. In addition to helping patients with the diagnosis, we hope these tests will also become useful in hopefully predicting the severity of the disorder in individual patients. This is essential for future clinical trials of new treatment options. Currently, our laboratory does not have separate funding for more involved testing. However, frequently these tests show that the patient has a new and not yet described genetic change (possible DNA mutation).
We are trying to develop ways in which we can identify what this genetic change means: whether it involves a new disease-causing genetic change or whether it is an innocent variant. Also, we would like to develop a mouse that has the NKH disease. This will give us a first tool to try out new treatment options prior to having to treat children.
We can accept your support for these scientific endeavours through the University of Colorado Foundation.
Cheques can be made out to the CU Foundation with the mention02-21975 Nonketotic hyperglycinemia fund, and sent to our administrative assistant:
UCHSC at Fitzsimons
Department of Pediatrics
Mail Stop 8313 PO Box 6511
Aurora, CO 80045.