AMCA Health Committee First Annual Report 2004

Vicki Daitch, chairperson
Vicki@pngusa.net
603-286-3220 

The Health Committee was created in August 2004 to monitor the health of the breed as a whole and to learn about the complex world of canine health research and its relation to malamutes.  Its mandate is to “monitor and support the breed’s health,” with the following specific duties: 

• Studying health issues known to affect the breed.

• Evaluating health trends in the breed as a whole.

• Establishing working relationships with the Alaskan Malamute Research Foundation, the AKC’s Canine Health Foundation, and other funding agencies.

• Networking with other breed clubs or research organizations that share common interests.

• Providing information and feedback to the AMCA Board of Directors and other committees with regard to health issues.

• Presenting a progress report to the membership at each Annual Meeting.

• Contributing up-to-date scientific information to the “Alaskan Malamute Health Website.”

Web Site 

The web site began to improve by leaps and bounds almost as soon as the committee was approved.  We have much more that we want to do, so please bear with us as we try to extend our own knowledge of malamute diseases and bring only the most accurate and up to date information to the web site for you to look at.  We are putting up new articles, links, photos and other information almost daily, and we plan to use the web site to help coordinate future research needs, surveys, etc.   

For the moment, we are devoting our attention to diseases that are well known in malamutes and that our members have expressed concern about.  However, with help from interested people, we will also try to offer information about disorders that may be less common in malamutes. 

The goal is to have a web site that is packed with solid information from reliable and up-to-date scientific sources, such as veterinary journals or textbooks.  We will try to publish photographs of conditions that are readily seen in the dog’s physical appearance.  We believe that providing links to personal stories will help owners of sick dogs to feel less alone, and we like that idea, but please realize that these stories should not be taken for “science.”  They are merely one person’s experience.  You must take responsibility for your dog’s health – do your own research and be prepared to discuss his condition intelligently with your vet.   

Providing Information about Breed Health to AMCA leadership 

Part of keeping the AMCA board and committees informed is, of course, just having the web site for them to refer to.  However, they also need to be aware when something interesting is coming down the pike as far as a potential research project, or when there are indications that a “new” disease is cropping up in malamutes.  (I use “new” in quotations because it could be an old disease for other breeds that is only recently becoming prevalent in malamutes or a disease that has always been around but suddenly becomes common due to a popular sire effect or some other factor.)   

We will make sure that the board is up to date on the activities of CHF, AMRF, Morris and other funding agencies that might be of interest to malamute owners.  Another very important function is making AMCA directors aware of any trends or concerns that emerge from our communication with other members, either via the web site or personal communications.  We are still figuring out the best way to track all of the important information that we need to keep up with, but we have a good start.   

Networking with Other Breed Clubs 

We have emailed or otherwise contacted several other national breed clubs in order to establish working relationships when it comes to dealing with diseases common to multiple breeds.  In particular, spitz type breeds share some similar disorders.  For the moment, we are focusing our attention on the Siberian, Pomeranian, Keeshond, and Samoyed clubs, though we will be establishing contact with other clubs over time.  

Like AMCA, the Siberian Husky Club of America has only recently established a health committee.  However, the committee chair (Sheila Blanker, DVM) is very willing to work with us to address issues that affect both breeds.  In particular, we have been discussing how to develop a study that would test the hypothesis that northern breeds have low-normal or slightly low thyroid values in the majority of healthy dogs.  She is contacting Dr. Lee, who has been publicly promoting the idea, about whether she would be interested in doing a study with us and what exactly that would involve.  Our brief web site survey in September suggested that hypothyroidism could very well be a significant problem within the breed, but it is still unknown whether we have an exaggerated number of false positives.  We look forward to working with the Siberian club to find out more about thyroid issues. 

Marge Kranzfelder, of the American Pomeranian Club, also welcomed our communication with her.  They have recently founded the Pomeranian Charitable Trust to fund their breed-specific projects in the event that CHF does not provide sufficient funding.  I shared my concerns with Marge about the general unresponsiveness of the Missouri group that is supposed to be doing DNA research on Pomeranian “black skin” and malamute “coat funk.”  The lab there has a very poor record of recruiting participants for its study.  She told me that she would talk to Dr. Johnson or his assistant Liz Hansen at Missouri to find out what happened with the Pomeranian “black skin” DNA study that was funded by CHF, whether they want to continue the study, and what they would need to do so.  We are hoping to establish an ongoing relationship with the Pomeranian club and its foundation so that we can work on coat disorders together.  

Building Relationships with Funding Agencies 

Good relationships with CHF, Morris, AMRF, and other funding agencies will work to our benefit when it comes to finding and funding research projects beneficial to malamutes.  It so happens that I am a member of the AMRF board of governors, and in the future it would be helpful if all chairpersons of this committee were also AMRF governors.  This helps to make the flow of information more direct from the health committee to the AMCA board to the AMRF board.   

My contact at CHF, Erica, has so far been very helpful about pointing me toward specific researchers who have interests that coincide with our needs.  Some of those researchers are very willing to talk to us about what mutual interests we might have, while others appear to be “in over their heads” in terms of the number of research projects that they already have going with no results to speak of.  These researchers are distinguished by their failure to return calls or emails, and they are probably ones to avoid until their labs become more responsive.   

According to Erica, CHF grant proposals are scattershot among all the breed clubs that might remotely be interested in order to have the greatest chance of getting a few to support it.  No one is offended if a particular club declines to support a particular piece of research.  As we learn more about the prevalence of particular diseases, about how seriously they impinge on the dog’s quality of life, about how they are inherited, and so on, we will be better prepared to make decisions about which studies to support. 

Monitoring Breed Health 

Monitoring breed health is not an easy task, given how many malamutes live with people who have never heard of AMCA.  However, we are working with Dr. Francois Elvinger, a veterinary epidemiologist at Virginia-Maryland Regional Veterinary College, to undertake a health survey to try to determine what health issues are currently most prevalent in the breed.  The new survey will build upon the very good breed health survey done by Dr. Jacobs-Knoll in 1996.  This type of survey is extremely time-consuming, and it would be of great benefit to the club to have the help of Dr. Elvinger in designing the survey and analyzing the data.  Because of the level of complexity involved, we don’t anticipate having this survey ready to go until probably late 2005.  The committee appreciates your patience as we work to make sure that we do the most professional job possible. 

Another, less scientific, approach is to monitor the anecdotal evidence of casual discussions or queries about particular diseases that keep coming up.  These are the early warning signs that we need to start paying attention to something.  From that we can consider adding questions to major health surveys, or doing short surveys just to gain some additional information. 

We ran a brief test survey on the Alaskan Malamute Health Web Site with encouraging results.  More than 200 people responded to our first survey.  (The results of that survey will be published separately.)  We are hopeful that we can gather accurate and inclusive data about what diseases are out there in the entire population of malamutes.  The committee is working to become more proficient at survey design and analysis so as to provide the club with the best possible information.   

Dr. Elvinger is also helping us with a detailed survey specially designed to learn more about coat funk.  He is seeking an honor student to do the work at no cost to us, under the supervision of Dr. Elvinger and Dr. Manning, a veterinary dermatologist at Virginia Tech.  That survey is projected to be completed and analyzed in the spring of 2005.  

Studying Diseases that Affect Malamutes 

“Studying health issues” pretty much encompasses all of the aforementioned activities.  All of the information that appears on the web site is as a result of the committee’s study and research about particular health problems.  We have assigned certain committee volunteers to particular diseases so that one person becomes a bit of an “expert” in that topic.  This also allows for better communication.   If people have questions or if they have new information that might be useful, it will be easy to figure out where to send them.   

Another of our goals is to find and/or initiate research that will benefit malamutes.  It is sometimes possible for us to initiate a project with a researcher that will be of particular benefit to malamutes if he or she is already doing work in that field of interest.  That researcher has to request funding from CHF, AMRF, or other foundations.  He or she may benefit from being able to say that the disease affects four or five or twenty additional breeds, and we can help with that through contacts with other breed clubs or foundations.  We may then benefit by gaining funding from other breed clubs or foundations to help with a project that is essentially originated by us.  

We have contacted several different researchers in this regard with varying degrees of success.  Several research dermatologists have been highly cooperative about working with us on a coat funk study, and we are in the process of negotiating the details of one of those.   

Dr. Linda Frank at the University of Tennessee has been very generous in helping us to get a reduced rate for the alopecia assays that can only be done there, as well as agreeing to evaluate the results at no charge to us.  This is the kind of research that can be done without impossible outlays of money, but that will provide us with much-needed information about this confusing disorder.  Dr. Frank’s proposal has been submitted to AMRF for the board’s consideration.  

Dr. Manon Paradis in Montreal is currently writing a grant proposal for next year to study alopecia problems in dogs from a different angle, and she is very interested in the possibility of including malamutes.  We have established communications with her so that once her proposal is ready we can work with her on finding funding and participants. 

After learning that we were interested in dwarfism research, Erica Werne of CHF suggested that we contact Dr. Danika Bannasch at UC-Davis.  Dr. Bannasch is currently doing DNA research on dwarfism in several breeds.  She was very willing to work with us, even to the extent of running some samples to look at a particularly promising candidate gene.  It turned out to be the same gene that Michigan had already tried, and Dr. Bannasch recommended that we hang in there with Dr. Venta at Michigan State, where our chondrodysplasia DNA research has been located all along.  While this particular contact did not result in anything new, we did learn that Dr. Venta’s team is considered very good among their peers, and we got the word out that the AMCA has something to offer in terms of providing a good data set for interested researchers. 

We have been very eager to contact Dr. Johnson’s laboratory at Missouri, because he is currently supposed to be working on two DNA studies that would be of great benefit to malamutes.  One is on alopecia X, in which he is supposed to be using families of Pomeranians, Keeshonds, and malamutes, and the other is an all breed study on epilepsy.  Unfortunately, his lab has been singularly unresponsive, which suggests that, while he may be an excellent scientist, he will not be easy to work with.  It took several months to get in touch with Liz Hansen, Johnson’s assistant. 

After trying to contact Liz Hansen via email or phone all summer, I finally reached her in early October.  She explained that Missouri is taking all kinds of samples and is eager for more.  According to Liz, they are working on everything from cataracts to alopecia to epilepsy to heart disease.  I found it curious that they had not been in touch with any of the major researchers in the field of veterinary dermatology about alopecia X.  One wonders how much progress they are making with any of the studies, but we recommend leaving the Missouri option open in the event that it looks better than any other alternatives.  It could be that we will get better results once we have an established relationship and a proven track record of participating fully in recruiting study participants. 

For the record, AMRF had similar communication difficulties with Michigan State University.  Erica Werne tells me that CHF has had similar problems with accountability from certain institutions.   It helps to know that this is not a problem limited to small foundations such as AMRF. 

All of these efforts to build relationships with research organizations will help to position us as a club that is actively engaged in health research and willing to go the extra mile to work with researchers.   

Budget 

None of the committee’s work has so far cost the AMCA a penny, but we are preparing a budget that will include such items as subscribing to publications that will keep us up to date on veterinary research, reproducing educational materials, or advertising the web site.  The committee itself will not be making funding decisions or doing fundraising projects.  Rather, it is responsible for gathering and disseminating information about breed health and about particular diseases.  We hope that this information will prove to be useful to AMCA, AMRF, and other interested people in making choices about projects affecting breed health.  Most of all, we want to provide useful information to malamute owners faced with confusing health problems in their beloved companions. 

Volunteers 

It should be noted that this committee has benefited from the work of some extraordinarily dedicated and talented volunteers.  They are the reasons that the health committee has accomplished so much in the few short months that it has been in existence.  In particular, we are proud of the web site, which has been a group effort all the way.   

The committee currently benefits from the work of the following members: 

• Vicki Daitch, chairperson and coat funk

• Laurie Wells, webmistress, web design, epilepsy

• Adele MacGillivrey, webmistress and web design

• Paul Cronk, hostmaster, postmaster, and technical adviser

• Joyce Delay, epilepsy and general writing

• Jen Effler-Leveille, thyroid disorders

• Karyn Colman, eye disease

• Carmen Rowe, orthopedic and reproductive disorders

• Sandi Shrager, survey analysis

I hope that anyone reading this will take a minute to thank a committee member for her or his work the next time you see one! 

Vicki Daitch
November 1, 2004