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Update from the AMCA Health Committee--6/23/2011
Information for donating to AMCA's Donor Advised Fund with CHF. This is the fund we will use for supporting all research projects through CHF, including the ongoing projects for cataracts, our future epilepsy study, and studies on polyneuropathy or ChD. A study on normative thyroid levels was also funded from this a year or so ago (we are still waiting on results for this). This fund is a 501 (c)(3), so any donations are tax-deductible. It will be posted on the AMCA website and we are also circulating to the membership by email. In addition, donations can be made online at: https://secure3.convio.net/k9hf/site/Donation2?1400.donation=form1&df_id=1400
Under donation type, you will need to choose "Donor Advised Fund", and under Choose a Program, select "Alaskan Malamute Donor Advised Fund". Any questions, please feel free to contact me!


It's been a very busy couple of months--both personally and on the Health Committee--and between missing an newsletter deadline and the July issue being devoted to the Illustrated Standard, I am overdue in a report to you all. My apologies! I am gleaning from a few Facebook posts that some issues are slightly unclear to at least some members, so hope to provide you all with an update as to our activities as well as attempt to clarify what I'm perceiving as some misunderstanding.

First, I'd like to describe our (AMCA's) relationship with the AKC Canine Health Foundation. CHF is instrumental in assisting parent clubs in advancing health research with their breeds. They help to fund (with parent club support) research projects which address various canine health concerns. CHF has a scientific review board that reviews research proposals, and has an extensive network of veterinary and canine genetic researchers who work with and compete for their funds. AMCA does have a long-standing relationship with CHF, and has co-sponsored two projects with CHF--one (Grant 372) on determining breed-specific thyroid ranges, and one (Grant 972) on hereditary cataracts in Northern breeds. The full report from Grant 372 on thyroid function has not been made available yet, and we had a recent summary of the one on hereditary cataracts a few months ago. Samples for the latter are still being solicited. Additionally, CHF sends AMCA a list of active grants which are in need of funding. This is ALL active grants who are in need of funding! Many of these do not pertain to our breed, and many are multi-breed studies where it is unclear what benefit we will receive from these. While we have some scientific background, our ability to ferret through all of these is limited, as are any funds AMCA has to contribute to projects we don't fully understand. The Health Committee has solicited the assistance of Tim O'Brien, an AMCA member and veterinary researcher, for his opinions and insight as to future opportunities.


Through CHF, we also have a Donor Advised Fund. This is a fund located at CHF which can be used for breed-specific projects. CHF is a non-profit, so donations made to this fund are fully tax-deductible. Until recently, members (including myself!) haven't been aware of the existence of this fund--however, we're expecting to make good use of it in the months and years to come as we start to focus more intently on research around health issues in our breed. The current balance ($2225.69 as of the beginning of 2011) is comprised solely of contributions made as a result of our club's Purina Partnership Program. This is a program whereby dog breeders/enthusiasts who feed Purina products sign up as a member of their club and Purina donates $10 to our fund for every $100 in Purina weight circles submitted by members. More information on this can be found at: http://purinaproclub.com/Dog/GetConnected/PPCP. Clearly, to sponsor more research, we will need to raise more funds. The Health Committee is actively soliciting volunteers who are willing to work in areas of fundraising!!! I will also be posting a donation form for this fund on the AMCA Facebook page as well as the website, and it will be in an upcoming newsletter.


Next, I'd like to update you on several areas we have identified as high priority, and which we are currently hard at work on. These are Chondrodysplasia, Polyneuropathy, and Epilepsy. Other issues are likely to arise, but these are our current areas of focus.


CHD: As you all know, samples from dwarfs and carriers were sent to MSU years ago in the hopes that the researchers there would be able to isolate the gene responsible for this disease. The work that AMRF contracted for was completed, with no gene found. In the years since, the research team (headed by Dr. Patrick Venta) has continued to work with this data in their spare time, using old technology--again, with no results. I think we are all acquainted with the disappointment the years without results have brought us. In late fall/early winter, Steve Anderson sent out the exciting announcement that with their contacts through CHF's assistance, Wendy Willhauck and Sandy D'Andrea had brokered a collaboration between a new researcher Dr. Mark Neff and Dr. Venta whereby they would use Dr. Neff's technology and the samples in Dr. Venta's possession to work further on finding the gene. This work was to begin in the spring after Dr. Venta had finished some more analyses of his own on this project. Last month we were told through CHF that Dr. Venta and his research team have decided to instead apply for their own grant through either the Morris Foundation or CHF to do this work by themselves. I have since been in contact with Dr. Venta, who has confirmed that this is his intention. He has agreed to write up for our newsletter a brief description of the work he has done thus far and the timeline for the next phase of this project. He intends to apply for the grant this summer and has agreed to keep me regularly updated as to the status of the project. I will immediately pass along any updates I receive to the membership.


While we are hopeful that this process will result in a test for us, we also recognize that other opportunities may be available and may present us with those results more quickly. In the fall, CHF had identified several researchers with interest and experience in the area of dwarfism, and we are currently contacting them to determine whether they have interest in pursuing research in this area with our breed. One research group--headed by Hannes Lohi in Finland--has already found the gene responsible for dwarfism in Elkhounds. They have run the blood on Hera (the dwarf imported from France) and have determined that the gene is not the same in our breed, but are willing to attempt to locate this gene for us. The CCC committee is currently hard at work tracking down all known living dwarfs and obtaining blood and DNA samples for banking with CHIC/CHF DNA repository, and will send these samples on to Helsinki and/or other available and interested researchers. One difficulty we have faced until now is that all of the samples previously submitted to MSU are now considered their property, and years ago no one ever anticipated us being in the position we now are in--with no DNA test, and few living dwarfs with whom to pursue a test. Fortunately, technology has advanced so much that when Dr. Venta required 100 samples 15 years ago, researchers now are saying that we may find the gene with as few as 12. We believe we have identified enough living dwarfs to provide these samples for us. These are all very recent developments, and the situation is progressing rapidly. I will be sure to keep the membership updated as plans are made.


Polyneuropathy: By now, most of the membership has read the fantastic article put together by our newsletter staff. We can tell by the reaction from members that this article has had a profound impact on many--and is being re-posted on our website. I reported a few months ago that the research team at the University of Minnesota who had identified the genetic mutation responsible for PN in Leonbergers was willing to test affected Malamutes to determine if the mutation in Leonbergers is found in affected Malamutes, and were seeking samples from affected dogs with whom to do this. Unfortunately, the availability of these is minimal--they have received four samples and have found that in these dogs the mutation is not the same. They have indicated that they are willing to pursue finding the mutation or mutations (we do not know the complexity of this genetic disorder) in our breed as well, provided we are able to obtain genetic samples. This may be something we pursue as we are able to obtain these. A Scandinavian research team is also hard at work on this project, and does have funding and samples to pursue DNA in this disease.


In the interim, we are setting up a process by which we can better identify instances of this disease and support these dogs' owners and families. With the generous help of a benefactor, we intend to set up a program which provides either cost-sharing or the payment of diagnostics for Malamutes strongly suspected to be affected with polyneuropathy. Vicky MacLean has agreed to help in setting up this program, and is enlisting the assistance of veterinary schools and neurologists in doing so. Hopefully within the next month or two, we will be able to provide more specifics. In the interim, if you know of ANY dogs who may have this disease, please contact myself, Vicky MacLean (agillabs@mcn.net), or Edie Thomas (windstarmals@charter.net) for assistance in getting the dog tested.


Epilepsy: This is a disease that is also of high priority for us and our breed. Unfortunately it is also a complex one that promises to be fairly difficult to address. Studies in other breeds have indicated that this disease involves multiple different gene combinations, which likely vary across breeds. Unlike CHD or the long coat gene, where we will know one gene is responsible, epilepsy likely involves multiple different combinations, and different types and presentations of epilepsy in different families may have completely different genetic makeup--all of which may also be influenced by outside factors. It's been difficult enough to try to find the simple recessive gene in CHD, so epilepsy promises to be daunting and expensive. Last year, the Schipperke breed announced some results from a breed-specific study which appeared to be very well done. This drew our attention, and we have asked Tim O'Brien his opinion of doing a breed-specific study in Malamutes. We seem to have a very poor idea as to what this disease commonly or uncommonly presents with, and how frequent it is in families. Tim suggests we work with AKC-CHF to put together an RFA to solicit grant applications from interested researchers. This is most likely to attract the interest of good research groups whose proposals will compete against one another, which will ensure we get the best science done. They will do the evaluation of the proposals and critically evaluate and rank all of them--something none of us in our club have the expertise to do at all. They may also contribute funds to help accomplish the research project. Tim also has learned that the technology involved in these projects is changing, and the cost for accomplishing far more is going down exponentially. We are likely to benefit from a careful approach to a project which also accounts for and learns from what other breeds and other researchers have done. In summary: although it may feel like we're not doing anything yet, by waiting and planning for several months we are benefiting greatly from what other breeds have learned at far higher costs.


Future Plans:


We will be doing a mineral assay at the National. Elissa Kafka-Kelly and I will be putting together a form for owners to sign up for this. We will also likely be providing opportunities for all owners/dogs to submit DNA to CHIC/CHF for future research projects. I'll be posting updates on this within the next few weeks.


Stay tuned! And please don't hesitate to contact me with any questions or ideas you may have.


Sandi Shrager

AMCA Health Committee Co-Chair