It is now 5 months since the original notice about epilepsy research went out. When I called Liz last week they had received 2 new blood submissions in the last 30 days, but no new sibling pairs. We are still at 11.

It’s time to talk about this lack of participation. The reason people are not sending blood is FEAR. One person actually posted on another forum, if you submitted blood, the researchers could let it slip that your dogs have seizures. THIS IS ABSOLUTELY NOT TRUE!!! Why do people make this stuff up?

The number of people who have contacted me about submitting blood is GREATER than the number of pairs they have received. The people at the University of Missouri won’t tell me ANYTHING. And that means, if I ever asked if they ever got blood from so-and-so, they WOULD NOT even say yes or no. As for me, would I repeat anything people tell me? Like over my dead body!

As a matter of fact, once blood comes in, the data is entered into the system and dogs/litters/families become numbers. Just NUMBERS. They never think about Muffy, Buffy, Max, Sam or BlahBlahBlah Labradors.

Will they ever think of BlahBlahBlah Labradors again? Yes, but only when they have solved the puzzle. Then donors will be contacted and told if their individual dogs are actually affected, carriers, or clear. That means, if you are hesitating because you are not sure if your dog’s seizures are epileptic or not, don't. They will tell you when they have the answer. There is no down side to this. All it will cost you is a little time and maybe as much as $30-40 for shipping. How many of us paid $300 for the original PRA test?

Come on folks. Just like no labrador need ever go blind from PRA again, no labrador need ever have epilepsy again. It will happen if we get behind this research. We can do this.

P.S. I put the links for research participation on a webpage. Just click below where it says website.

I was at a Show recently and the BUZZZZZZZZZZZ was about a certain VERY popular Stud Dog and "all" the off-spring he has produced with seizures!! "HELLO" if that's the case then why aren't ppl doing something constructive instead of all the whispering!!

Please!! for the SAKE of our beloved Labradors let's do the right thing and get to the bottom of this once and for all!!

THANK YOU Joan for all your time!!

I believe that our club, MJLRC, will also donate free blood draws at the health clinic in November. As we are also doing 20/20 Optigen clinic, no one should know if the blood draw is for Optigen or some other purpose.

If you want absolute anonymity, just go to your regular vet with your Lab, please, and mail in the blood to U of Mo. Given the number of Labs I have known in the NY metro area with seizures, I find it unbelievable that this is not addressed. Were the rest of the dogs all put down? Are there no more seizing Labradors? If you are going to put down a seizing Lab, at least do the blood draw before you do!

Unfortunately, the rescues I have had with seizures were long ago, some--especially the show, even specials, quality ones--without any identity coming into rescue. I do think that it was fear and cover up.

Now we have the opportunity to help the research the way we did with PRA, someday to use lines and maybe even Labs that have had seizure problems without fear. Just posting on our websites other causes for seizures does not negate some of the genetic components in some Labradors and even mutts. Even with the little breeding I have done over the past three decades I could predict a problem when another breeder friend in another state unknowingly bred to a beautiful NJ dog with sibs who had a seizure disorder--and then he and his pups developed them. That saddened, health testing breeder is no longer breeding. The dogs produced were beautiful, otherwise sound, with good temperaments and instincts, but with this flaw. One dare not let them swim in deep water for fear they might seize and drown. How sad for the breeder, how sad for the pups, how sad for the breed. Let's prevent this in the future!
Thanks!

Paying to participate in research is a difficult sell.

"Paying to participate in research is a difficult sell."

It's about the cost of a show entry. It's way cheaper than one vet visit with a seizing dog, or replacing your carpet after a particularly messy seizure, replacing a pup that seizes, or replacing one broken chair that got knocked downstairs by a writhing Labrador. A little more than one bottle of low dose phenobarb.

If you are local to MJLRC, maybe talk to Joan in private. She's not going to tell about any dogs. Maybe in a hardship case, after the free blood draw at our clinic, we could get it shipped for you.

Believe me, if you ever had a dog with seizures and you could help stop this disease in its tracks, $40 is chump change. The problem is not 40 bucks, it is FEAR.

In the examples you gave, you buy some *thing* with your $40. In this case, the $40 is more of a donation to research that may or may not bring results useful to you in your lifetime. Maybe it's fear or maybe it's lack of sufficient interest to donate $40. Usually researchers have to pay participants to get participation.

How many people spent over $1000 on the original PRA test, only to learn the test gave incorrect results? Why do I think their $$$$$'s paid for research?

Wow! Those are two really interesting counter arguments against eliminating a horrible and devastating disease, both for the dogs that have it, and those owners who had them and loved them.

You should not really consider donating because the results may not benefit you in your lifetime. Well the interesting thing about that argument is who knows what a lifetime is. They might discover the cure in two days, but if you are run over by a truck today, than the cure really would not be worth anything to anybody according to your lights, because YOU PERSONALLY could not benefit from it. What a wonderful altruistic point of view.

The other great consideration is, even if you benefit from this important scientific work, you should also BE PAID for participating as well. Forget the fact you would never have to breed an unhealthy dog from this illness, forget the fact you would never have to have families who bought puppies from you go through the hardship of watching a dog goes through this and possibly losing it; there just SIMPLY IS NOT ENOUGH PROFIT in helping this cause!

Well not to dispute the warm fuzzies you give off with your arguments, but a cure is a cure is a cure. Even if YOU might not personally benefit from it, dogs and people down the line will, when that discovery is made. Most people are more than happy to help others, even if they don’t derive a personal benefit to themselves.

As far as the argument, “why cure a disease now if there is no profit in it for me”, I am not even going to touch your statement. I will let the rest of the Forum decide where you seem to be coming from, and decide what your point of view is worth.

Have a really nice day ( or as best as you can considering your view of how the world should work ).

In the real world, researchers usually have to pay participants (in some form or other) to get participation. Right or wrong. That's simply the way it is.

And I have never found that beating people up for not participating ever wins any converts to the research. In fact, quite the opposite. If you're mad and want to blow off steam. Go ahead. But you aren't getting more people to participate with your rants.

I was simply dissecting your points of view for what they were. That wasn't a rant, that's analysis. My final statement is that we can let the board readers decide whether they agree with your "charitable" points of view or not. I hope your comfortable with that.

Haven't you heard of Karma? With that kind of attitude I will pray for you that you NEVER in YOUR LIFETIME breed to a dog that carries epilesy and produces a pup or more with it because you were unwilling to help research to come up with a test that would eliminate this horrible disease from our beloved labradors, the sweetest dogs on earth. I bred a dog with epilepsy when I first started breeding labradors and the owner of that dog had to keep the dog on meds for her lifetime, even if this research weren't kept secret as to the ones tested I would still have sent in blood if those dogs were still alive to prevent anyone else from breeding dogs with it in their lines. Never have I heard of being PAID to participate in developing a test and this is the only "real world" I know of, these people are funded by donations! God bless and I sure hope you can sleep well at night with that kind of attitude.
Aloha,
Jackie

Having been on the receiving end of an epileptic Labrador pedigree I would move heaven and earth to submit a DNA sample for research. Problem is that my epileptic Labs died years ago so a sample is impossible. I read an article on the internet recently re the repercussions for owners of epileptic dogs and the phrase that stood out most was "every seizing dog is breaking someone's heart".

Here is the article (What's The Big Deal) written by Laurin Howard and I can relate so well to her experiences.
http://www.himmlisch.com/bigdeal.htm

What happened to the fact that we are supposed to be stewards of this wonderful breed. This is not about us...it is about these animals that we take such great care in raising. My first "show dog" was epileptic...started seizing at 6 mos. I had another several years ago from a very popular pedigree. I would gladly participate if both of these boys were with us. Someone has to fund this research to help our beloved breed..this money is certainly not going to come from corporations or government. Did we not raise money for continuing TVD research? What is the difference?? Maybe there will never be a cure in my lifetime...but I am glad to help in whatever way I can. It is not about me...it is about the Labrador Retriever breed. Wow!

Oh give me a break! I don't even have one epileptic dog to submit, much less two or more. So my comments are simply about the nature of research. If you want to do something meaningful instead of beating on those who don't agree with you, put you money where you mouth is. Donate money to the research so that they can pay participants.

Brdr wrote: " Oh give me a break! . . . Donate money to the research. . ."


Believe me, many of us are. Joan is spending a lot of time and effort to raise money and awareness. Hence the posts about the Garage Sale to raise funds at the MJLRC specialties, where breeders care. Hence my post about free blood draws, etc. As for paying participants, ethical guidelines often involve reimbursement of less than one hundred dollars for humans who must travel to have blood draws done on themselves. If one has a seizing dog and is caring for it instead of making sure one doesn't have any any more, one is at the vet having blood draws often--what's a couple more tubes and donation of a mailing?

I am sorry that you are feeling so angry and cash poor. Hope tomorrow is a happier day for you, and for Labradors. A Lab would say "don't worry, work hard, and be happy" if it could talk.
Wags and smiles!
Charlotte

In response to the supposition that people are paid to participate in research- This is not true. I have a great film on cancer victims (humans) and what they go through to participate in studies that would put that myth to bed. Of course, if it's your life rather than your dog's health, maybe the thousands of dollars on the one hand vs, the $40 on the other seems better spent.

There are firms that pay people to participate in third stage studies that test healthy volunteers for side effects of a medication. The epilepsy research is more of a stage one study, in which people who have the disease participate in the hopes of helping to find a cure. They may go to heroic lengths in the hopes that their lives will not be wasted even thought they know that they themselves are very unlikely to be cured.

Sorry, Joan. The two dogs I had with seizures have been gone for many years.

I know some breeders that are aware of seizing dogs that they have produced but do not contact the owners to inform them of this research as they do not want to bring up the topic with the owners.
I wonder if there is a way to alert veterinarians that this research is going on and to have the vets encourage pet owners to submit blood work. I think most pet owners are completely unaware of this research project and would GLADLY submit the blood at the next office visit. Any pet owner knows the heart ache of watching their beloved pet go thru this horrific disease. Even the staff at the front desks could make calls to clients that they know have seizing dogs.
I think asking breeders is not going to further this research (as you can see from the lack of co -operation already) but "soccer moms" can get it done.
And to the heartless poster who thinks they should be paid-I'm disgusted by your lack of compassion. I had a family member donate bone marrow to someone we did not even know from another country-we were not given anything for all the pre-testing that needed to be done, the hours spent in a hospital, never mind the surg and extraction of the marrow-in this life you do what needs to be done to help others. If you are in this breed you are part of a community, a family-you should do what needs to be done even if it does not directly affect you-put your hand in your pocket and donate a few bucks, even if it means giving up dunkin donuts coffee, a cig or a drink for a month.

Nasty accusatory people accusing me of lack of compassion--that takes the cake. You folks really ought to listen to yourselves.

I think that maybe YOUR the one that ought to listen to yourself and see what we all see... a person that is not willing to help anyone out unless there's something in it for you.
Such a sad world that we live in nowdays where no one is willing to help anyone unless there's something in it for themselves
Aloha,
Jackie

FWIW I can understand breeders' concerns. If I knew of a dog (or dogs) that had just started to seize and they were just 18 months old, would I want to contact all the owners of the non-seizing littermates? I seriously doubt it. Why would I want to scare those people? They could easily end up panicking over every little twitch. Doggie dreaming could put them in orbit. Yes, there might be a select few I would contact. Only the few that I knew very well. People with both feet on the ground who always see their glasses as half full. People that are not easily alarmed. I would call them.

The story is entirely different with older dogs that are past the age seizures generally begin. I have contacted families whose dogs are older. I tell them that since their dog hasn't had seizures by this age, chances are next to zero that they will ever have seizures. The reactions I have gotten have been surprise and curiosity. The only problem I have had with them is a lack of urgency. In general, they are happy to help, but what's the hurry? That is when I had to be more proactive.

It has been worth it to me to do whatever it took to get the normal dog's blood. I pay for everything. I have borrowed a dog and took it to the vet myself after the owner forgot all about it at the dog's annual exam.

I don't think I am at all out of the ordinary. Anyone who has had a dog seize, knows how tough watching this can be. And I would never wish it on anyone or else. For sure I wouldn't wish it on a dog.

Joan,

After reading some of these posts, not all of them,
I think I will give a donation. If the address isn't already on any of these posts will you post it for me. I have seen people have grand mal seizures and it's just a horrible thing.
I don't understand people not wanting to try and put an end to this happening to any of our dogs.
I consider myself very thankful and lucky I haven't ever had a seizing dog. But I'm not done breeding.
I have a daughter of my brood bitch I have yet to breed. So, I sometime down the road, could very possibly have one. I just have to wait and see.

Donna

Donna,

That would be wonderful. Here is what I would like you to do. Write a check, made payable to the University of Missouri. In the note area at the bottom left, write "canine epilepsy research - labrador retrievers". Then send it to me. I plan to give credit to all the contributors to MJRLC's garage sale & that way I can make sure your contribution will be acknowledged. I will forward all contributions to Liz Hansen's office at the university. Here is my address: J. McInnis, 893 Sycamore Avenue, Tinton Falls, NJ 07724

Thanks!!!!!!!!!!!!!!!!!!!

Yes and as I have posted before, I am the breeder of a seizing dog with owners who refuse to allow a blood draw (at my expense) because they "don't want to put him through anymore pain than he is already in".
I have begged and pleaded to no avail and basically gave up.
I could have provided samples from the dam and other half siblings (if needed) as well.

Anon,

Whew! Nobody said this was easy. I feel for you. Would you consider calling Liz and discussing if blood from relatives would be useful or not? Liz's number is: (573) 884-3712

They often have to leave home and live close to the clinic. They have to quit their jobs. They often pay for everything except the experimental drug itself- blood draws, included.

Joan I would be very willing to do that!

I got my start in Labs a little differently than most people. I leased a bitch and bred her. Long story short, I ended up with two puppies and kept them both. They both had epilespy. It was heartbreaking. This was back in the early 80's and I would have done anything in my power to have participated if a research project would have been available at that time.

I am not from the US and want to help, but could somebody help me, what does seizures mean?
Thank you,

Thank goodness for the people who stand up and do things because they are the right thing to do. Thank you to all of the volunteers who help at hunt tests, chair specialties, coordinate health clinics, etc. And thank you to all of the people who donate their time and money for the overall well-being of this breed. From my experience, it is usually a very small group of people who make it possible for everyone else to participate in the sport of dogs. Any time someone stands up to promote overall health, well being, work ethic or breed type, we all benefit. No one in this breed has gotten to where they are without the dedication and hard work of those who came before them. Some of those people never benefited from their own dedication, but breeders as a whole did. Thanks to those who believed in and contributed to Optigen research, the chances that I will produce a blind dog are smaller. The gene pool has grown bigger because I no longer have to avoid known carriers with a clear bitch. Anyone who currently breeds a litter can produce epilepsy, so a test that can help us eliminate it will benefit every breeder out there. Because there is currently no test for epilepsy and no one is willing to fess up about epilepsy producers, most of us are breeding blind. I personally own a dog that has never had a seizure, no littermates have had seizures, neither the sire nor dam have had seizures nor have any known offspring of the sire or dam. But there is a dog a few generations back in the pedigree that produced some seizures (discovered after my dog was born) in more than one litter so my dog has never been bred (the dog that produced the seizures was neutered). This was a hard decision for both the breeder and me because this dog has many attributes that could have contributed nicely to our breeding programs. I contributed to the epilepsy research so that in the future no one else will have to forego using a nice dog because of unknowns. This dog could have no epilepsy lurking in his genes – the problem is I don’t know and seizures are not something I am willing to risk. Because others are willing to take the risk, I would like a test available so that in the future no one is ever at the mercy of people who are willing to take risks that they would not take.

Last year I got word that one of my bred by pups in a pet home had started seizuring at under a yr of age. Upon contacting the other 8 families who adopted from my big litter, I found out a couple other things going on in that litter. For some reason, some families don't think about contacting their breeder when health concerns crop up. This family who has the seizuring young dog always meant to contact me but they got busy with their every day life and never got around to it. It was me who contacted all 9 of those families who adopted my pups out of that litter. I do this on all my litters every year just because I know that every now and then, there will be a family who just didn't think to contact me.
When I found out about this family's young seizing boy and we ruled out that he got into some toxic substance nor had some sort of physical altercation to cause seizures, I put together a blood draw at this family's vet up north. I brought the dam of his young dog and 2 pups from this same dam as well as the dam. I sent in the paperwork and blood to the University in Missouri. It wasn't that difficult to get the job done and you would be surprised at how many of those families I contacted about their dogs in that one litter volunteered to help in any way they can. They never became alarmed when I told them about the seizuring dog that is related to their own dog.
Breeders need to go out on a limb and start keeping in contact with thier puppy families on a regular basis, annually anyway. I didn't enjoy hearing that 2 more families had health issues not related to epilepsy but to do with allergies and torn cruciates but it allowed me to understand what is going on in my lines so I can make better breeding decisions.

I should mention one other thing I have done. This wasn't possible 15-20 years ago, but in the internet age, it is so easy. I have a stock email that I sent out shortly after a litter birthday. The text follows:

Hi All,

The kids just turned ____ and I hope everyone had a good year and a great birthday. As a breeder, I need to know how everyone is doing. It helps me make appropriate breeding choices in the future. Of course, I hope for glowing reports, but please share what you can, not only the good stuff. Comments on personality, training, any medical problems or anything else you might have encountered would be very helpful. I really appreciate your input! TIA

And don't forget to send pictures!

Joan

You can see, it should not upset anyone. And it is not coupled with an incident. A good friend who started in labs over 35 years ago did this routinely using snail mail. It is much easier, now that puppy buyers can hit the reply button.

To the above two posters, that is what every breeder should be doing-families do not always contact you if there is a problem. I understand that as professional breeders you get busy with litters, shows, work and families but, you are so cautious in placing your puppies, don't you want to know what happens to them as they grow? Reaching out may just help this cause along, even if it brings you news you don't want to hear, it is information you should know in order to keep bettering you breeding programs.

Joan's idea of birthday greetings is a good one. I send out a family Christmas card by email if I have an address and by snail mail if i don't. I compile all the news I've heard from the whole year litter by litter and include pictures in the email letter. I tell everyone they can read the whole thing or just the parts they are interested in. It inspires replies from people I haven't heard from- just so they can be included!

My problem is people who move and change email addresses/phone numbers so that I have no way of getting in touch with them. The first I know of it is when the Christmas card comes back address unknown. I have lost touch with half the dogs from some of my litters over the years because people move and don't tell me. Does this happen to others, and does anyone have a solution to it?

Although I agree this research is a good thing, I also have to agree that most research does pay for participants.

We participated in an Angus research and the research paid the vet to draw blood and shipping cost. Otherwise I doubt it would have motivated ranchers to gather up cattle and spend the day drawing blood.

I also am currently involved in a nutrition and health research program though state university, I get paid $10 at each meeting I attended and $50 every 3 months I continue in the research program.

On another thread, I've posted a research project for evaluating seizure medications. The study pays for an elaborate evaluation of the dog and medications.

Although research to find genetic causes is noble and important, medications to manage seizures are probably more important to the average pet owner. And people are compensated for their participation in a variety of ways in this study.

Perhaps its time for new motivations for the genetics research because the current method is not terribly successful in getting participants. Blaming people and calling them names is not likely to encourage participation either. Maybe cooperation between research projects so that people have some motivation for participating other than the "greater good," which is not terribly motivating to the average pet owner.

It doesn't really matter how other research projects are funded or how participants are compensated.
Joan and the researchers are trying to get participants and funding-if you are in this breed for the right reasons you will care enough to support the cause in ANY way you can-looking past the fear of finger pointing and contacting families for updates and information,taking your own dogs in for blood submissions, or making a donation.
Please, try to focus on the good that is trying to be done and forget the how it should be done.

You do make valid points however, the average pet owner has NO idea this research is being done. It is obvious that the breeders are not informing them, most do not read this forum or attend shows. Perhaps the motivation for more participation is awareness.

Cooperation between research programs could encourage participants from a program that offers evaluation and treatment to participate in the genetics research. It's not a competition; people who are motivating to participate in one would be more likely to participate in the other.

well said

Peggy, one thing I started doing to encourage families from staying in contact with me even if they move away, is to give them a handful of biz cards to put in their wallets, magnets for thier fridge and then I staple a card in their puppy folder and health record folder as well.
I've had some families move away but they kept their same email or phone numbers. I always write this info down on that AKC Litter Record. I get as much information in the way of contacts as I can, including their job phone numbers.
This moving can be a problem esp when the families forget to contact the microchip registry to update their new phones but my phone # is always listed for someone to call me if they dog gets stolen or lands in a shelter.I may not have the owners phone if they moved but at least I got my dog back to rehome if need be.
What really helps to stay in contact with all these families over the years is to sit them down and make sure they understand how important it is for you as their breeder to keep informed of any health problems that may crop up. Then I go through the list of possible health problems. Some people don't realize that allergies are or can be genetic so we talk about that.
I do remind them to be sure and send me any new emails or phone numbers whenever they move or changer services. Most of the time, they do keep me updated on changes. Many of the families book mark my website.

Thanks for the suggestions. Some of them I already do, but I got some new ideas.

What is wrong with some breeders ? What are they so afraid of ? Why would you let another puppy have a seizure. Another family or you, have to go through that. What is $40.00 if it can help our wonderful breed. If you know your line has it, PLEASE, pull that stud dog from your breeder program. I don't want to get that awful surprise. Step up and do the right thing. It will come around to bite you if you don't.

No one is blaming just the boys but boys do have the capability of producing many more litters than girls. If you hear about it over and over from the same stud-dog it kinda makes ya wonder.

Boys can't produce without girls ... and, the only thing you should be wondering from your statement is "yikes - my girl carries the gene". You need a good education like I received. If you're "wondering" then you're in denial.