October 20, 2003 --- Sturbridge Host Hotel & Conference Center, Massachusetts
From Jim Kuehl, Foundation President:

Overview

At the 2003 National Specialty in Sturbridge, Massachusetts, the AMRF had a time slot between the end of Best of Breed judging and the beginning of the banquet at seven PM to hold our annual informational meeting. We had tried to make a brief presentation at the general meeting earlier in the week, but time ran out and we were unable to speak about the AMRF or to publicize our meeting. After BOB judging there were stud dog, brood bitch, and brace classes remaining. Then for some reason the winners that day all wanted pictures to memorialize the event. We could wait no longer and started the meeting, but there were not many attendees. On the other hand, there were more non-AMRF members in attendance than in the past few years.

At the AMRF meeting I gave a presentation of where I think the AMCA and the AMRF stand regarding chondrodysplasia and genetic research in general.

Presentation

Historically, the AMRF grew out of a push for research into chondrodysplasia.  In 1995, AMCA members established the AMRF as a not-for-profit charitable foundation that would be exempt from Federal taxation under the provisions of 501(c)(3).  By happy coincidence, researchers at Michigan State University, who were studying ChD, had a candidate gene for ChD.  The candidate gene in this case was one that paralleled similar problems in humans.  The research required funding of $20,000 and tissue samples from at least one hundred dwarfs, carriers, and non-carriers as closely related as possible.  There were few dwarfs available in those days and few test breedings.  Members of the AMRF and the AMCA chondrodysplasia committee then began collecting blood samples from dwarfs and puppies from test breedings.  They also began selected breedings to produce pups for the MSU research.  The AMRF entered into a contract with MSU and paid the university $20,000 for the research.

In late 2002, MSU reported that the research was completed and that the ChD gene was not at the candidate site as hoped.  MSU continues to look for the ChD site.

Since the establishment of the AMRF in 1995, research into canine diseases, especially genetic diseases, has undergone two revolutionary changes. Next year researchers expect to complete research and publish the dog genome, which is the sequence of all the genes in dogs. With this tool, scientists expect that genetic research into dog disease will speed up a hundredfold. Though this is good news for research in the future, right now, in 2003, it means that researchers are reluctant to continue projects until the genome is available. For us this means that, though MSU and others continue research into discovering the site of the ChD gene, and thereby developing a DNA test for ChD, they are stalled until the genome is published.

The other great change in canine research has come from the American Kennel Club Canine Health Foundation. I think the AKC started the CHF also in 1995. The CHF seeks to work with breed clubs to help fund research into the causes of diseases in dogs. They have national funding and they are able to match contributions by Clubs into some kinds of research. In order to participate, though, clubs must give funds to the CHF for its exclusive use. This protects the money from suits against the breed club. The breed club advises the CHF regarding what projects interest the Club. These are known in the business as 'donor advise funds'.

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Not only can the CHF help fund research; they also have contacts with scientists who can evaluate proposed research to see if it is legitimate. With its large economic base, the CHF is in a better position to negotiate favorable contract terms with researchers. For example, any DNA test developed by MSU would have been the property of MSU under our original contract.

We were lucky to find a research lab willing to undertake DNA testing for ChD for a mere $20,000. Compare that amount to the over forty million dollars the National Institute of Health paid to fund the research into the dog genome. The CHF can help breed foundations with the economic clout necessary to interest researchers in our specific problems.

I attended the biannual CHF conference in St. Louis last September. Many nationally recognized researchers spoke, and in answer to the question of what breed clubs can do most to help research, they answered that providing tissue samples is invaluable to them. This confirms what the MSU researchers told me. The money we gave them was not as important to MSU as the blood samples and pedigrees we provided as a club. It may surprise you to learn that when dog owners are asked for blood samples from their dogs because the dogs are suspected carriers of some genetic problem, the owners go into deep denial and either refuse to provide samples or provide them on the basis of anonymity. The researchers need not only samples but also pedigrees in order to trace suspected disease genes. The MSU folks praised us for providing both.

Because of all of this, I see the future of the AMRF as an organization that directs funding of Malamute research with the help of CHF donor advise funds. The AMCA can have considerable input into the use of these funds as well. Additionally, the AMRF can support whatever colony of dogs is necessary to promote research just as we have supported the dwarfs and carriers and puppies in the MSU research project. In that regard I am especially proud of this program, headed by Sally Stephens and with the help of many others including Robin Haggard, Cindy Benson, and Jocelynn Knoll. We are also grateful to the many AMCA members who have provided homes for dwarfs bred through this program.

The world of canine genetic research is changing too fast for slow moving groups like the AMCA or the AMRF easily to respond. Though the MSU project contributed to the general knowledge of ChD, it did not have any immediate benefit for our Malamutes. However, when the dog genome project is complete, we can reasonably hope for a much faster turn around time in research than the seven years taken by the MSU project. The AMRF, with the help of the CHF and the AMCA and its members, can help provide whatever is necessary for the ChD research. We all look forward to a time when we can have a simple blood test for ChD and other genetic diseases.