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I can understand how devastating this could be for a breeding program but it doesn't seem to me to be the type of information that should be kept secret.


On a daily basis we see advice being given here that puppies should not be purchased unless their parents have hip, elbow, heart and eye clearances and buyers should be aware of parents Ichthyosis status but there is never mention of parents' NCL status. If I were purchasing another Golden, NCL status would be my first question and I would want clear evidence to support any claim of clear status. The consequences for the affected puppies are just so horrible.
 

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One breeder that owned a carrier that she bred and had produced other carriers, said she was going to spay/neuter all future carriers. She had to be talked down off that ledge.

I have friends that are breeders and it was very intimidating to send in samples. Then of course if your dogs are clear you want to share with the world. Those with carriers, it must be earth shattering.

That’s why I say i would breed to a carrier. There is no problem breeding clear to carrier.
 

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Besides the two Aureo dogs, I'm not finding anything that's not pure field pedigree as a carrier. One dog has a Beau-D son as a sire -- certainly show lines -- but it's mother is a field line NCL carrier.

I don't understand how the Aureo dogs are carriers and we haven't found it in ANY other North American show lines. Unless people are testing and not putting it on K9data.
Beau-D is NCL clear. I also know for certain that his grandsire, Skye, is clear (DNA was tested), but I cannot list it since he's not my dog. Still, very reassuring to us with young pups.
 

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A lot of us are testing our breeding dogs just so that many puppies can be clear by parentage.
 

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Kate
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If it turns out you were breeding a carrier, it has the potential to turn into a real can of worms when opened. People are moving forward but very cautiously at this point.
Swampy - I think it already is a big can of worms that's wide open because of the pedigrees of the dogs identified as affected or carriers.

There is no way anyone should get a puppy from a related pedigree if the parents have not been tested for NCL and results have not been verified on OFA.

W/r to most show lines... I think something to keep in mind is a lot of people ARE getting their dogs cleared. And I mean no carriers showing up. Everyone I know checked their dogs (including very close relatives of my dogs) or are preparing to get the next generation (up and coming pups who are due for genetic tests) done using the test that includes NCL. As far as I know these tests will be the new norm with people getting the package that includes everything.
 

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I am rather disappointed at the callousness of some people.

It's easy to publish favorable results. You just have to check a box, right? I tested my dogs very early, there were not even 100 dogs entered with OFA yet. That is how new this test is. People didn't get bad news and HIDE it away for years.

Some people get unfavorable results. They are essentially blindsided with something they were not expecting. It isn't easy to open an envelope and find out your family member is a carrier of an incurable, untreatable genetic disease, or worse that it has this disease and is going to die. It takes time for people to process that information, learn about it and put it into proper context. To go through that process may take weeks or months for them to fully come to terms with the situation.

After they have gone through the process they will be in a position to consider what information they wish to share.
 

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where the tails wag
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It does take courage. As someone who tested as soon as she knew about it, it took a lot to check that making public option regardless of what the results may have been. And you better believe I was on tenderhooks knowing I had a pregnant girlie with both parents as of yet being untested -- all the while people exclaiming they could not possibly offer homes to puppies with unknown results -- that was how new the test were.



The people who are facing this head on are doing the very best they can, and if they quietly retire any dogs who are carriers who are we to judge? Same with anyone who chooses to simply not publish the results -- as long as there is no risk of a Carrier to Carrier breeding, it really is a private matter that may well be shared only within the breed lines affected. The important things are to get all the dogs tested and do our best to prevent any more puppies being born with this condition -- and to offer all the support we can to those who live with this each and every day.


And I believe there were many of us when this first raised its head who were preparing to make very difficult decisions should results come back showing carrier/carrier on an as of yet unborn litter. I hope no-one else needs to ever be prepared to make those decisions.



I am rather disappointed at the callousness of some people.

It's easy to publish favorable results. You just have to check a box, right? I tested my dogs very early, there were not even 100 dogs entered with OFA yet. That is how new this test is. People didn't get bad news and HIDE it away for years.

Some people get unfavorable results. They are essentially blindsided with something they were not expecting. It isn't easy to open an envelope and find out your family member is a carrier of an incurable, untreatable genetic disease, or worse that it has this disease and is going to die. It takes time for people to process that information, learn about it and put it into proper context. To go through that process may take weeks or months for them to fully come to terms with the situation.

After they have gone through the process they will be in a position to consider what information they wish to share.
 

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Callous? Maybe. Heartbreaking? Of course, especially for those who own or bred affected offspring. No one ever said that breeding was faint of heart, and NCL is going to challenge a lot of people's ability to move forward.

What pisses me off (I realize that my position as an admin for K9data puts me at risk for all kinds of things like this) are the emails that I have received that sound like this:

Saw in K9data that the sire/dam of my dog tested as a carrier, breeder never contacted me about it.

Heard that I should be testing for this, got my dog's results back as carrier. Breeder says something like "well, now you know."

Owner hears about the disease, contacts breeder about whether or not they should be concerned, and breeder won't return calls.

Owner hears about disease, breeder is non-responsive, so they contact the stud dog owner, and stud dog owner says that yes, the male is a carrier and all owners of females that were bred to dog were notified and he requested that they please contact the puppy buyers, regardless of dog age (since most stud dog owners don't have that information), and the breeder never contacted the puppy owners.

Owner emails me a copy of his dog's carrier result, sire tested clear (and is in the OFA database), breeder claims their girl isn't at risk because there aren't any positive tests behind her. Even though the usual field suspects are only 3 or 4 generations back.


This isn't about us as breeders, especially those of us who are trying to do the right things. This is about the DOGS. This is about helping to prevent any more affected puppies from being produced. If you don't think that the events of late last year and early this year can't happen again, you are wrong. When you start looking at the number of puppies sold on full registration from suspect pedigrees, it probably already HAS happened but since the news isn't out there to a wide enough veterinary audience, a single dog here or there slips through the cracks, and another family has to deal with the trauma this disease inflicts. This is about getting the word out about this disease to that wider audience and trying to keep it from happening again and again. Of course I am sensitive to those that are dealing with the bad news. But guess what? It doesn't change the results, and it doesn't mean that they don't have to do the right thing, like Ron and Bruce and Mark and Stu and many others have done. Wouldn't it be worse to find out that because of someone's silence, that more affected puppies were produced?

If you won't send your results to OFA, please please please put them in K9data.

I will continue to research this issue, and will continue trying to help people understand how deeply this gene is ingrained in the fabric of our breed. If that makes me a bad person, so be it.
 

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Callous? Maybe. Heartbreaking? Of course, especially for those who own or bred affected offspring. No one ever said that breeding was faint of heart, and NCL is going to challenge a lot of people's ability to move forward.

Leslie,
Thank you for your great response. You've seen first hand how many dogs are entered into k9data as carriers or affected and what is showing up in the statistics or on OFA. Where are those carriers? Why are people hiding?


In a previous post I said I would breed to a carrier. Well my friend bred his carrier to clear dogs and produced a nice field litter. I think 3 of the pups are carriers. Nice dogs. Puppies are ready to go to homes. Sorry to say, none of the carriers will be going to my home. I just couldn't do it. I just couldn't take that chance. It's not the first generation, it's the 4, 5, 6 generations later that really causes the problem. In the field world, most puppies are sold on full registration. So it's implied that most will be bred if they do well in the field world. If breeding my dog to a carrier is potentially going to cause issues in a decade or so, what have I done? Was it the wisest decision? Not sure if I would be able to breed my clear boy to a carrier bitch now.



I know more than one breeder that found out they bred their clear bitch to a carrier dog in past years (unknowingly), and is not notifying the puppy buyers that they have sold to over the years. Too many don't want to have that discussion. I am fearful of what we know may be spread far and wide.
 

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Given the seriousness of NCL isn't it time for the GRCA to include it in their COE's list of recommended DNA tests? It seems to me that NCL warrants that inclusion much more than Ichthyiosis. I would like to see the GRCA make the DNA test for NCL a requirement for dogs selected for breeding.

It seems that knowledge and education are really important here. People need to understand that as long as they are not going to be breeding, they should have no concern about owning a carrier. But if they are going to be breeding they really need to know the NCL status of the dogs to be bred and never, ever breed a carrier to carrier. Breeding carrier to affected would also be disastrous but given the nature of NCL unlikely to occur since affecteds typically don't survive to breeding age.
 

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Given the seriousness of NCL isn't it time for the GRCA to include it in their COE's list of recommended DNA tests? It seems to me that NCL warrants that inclusion much more than Ichthyiosis. I would like to see the GRCA make the DNA test for NCL a requirement for dogs selected for breeding.

It seems that knowledge and education are really important here. People need to understand that as long as they are not going to be breeding, they should have no concern about owning a carrier. But if they are going to be breeding they really need to know the NCL status of the dogs to be bred and never, ever breed a carrier to carrier. Breeding carrier to affected would also be disastrous but given the nature of NCL unlikely to occur since affecteds typically don't survive to breeding age.

PRA causes blindness and is hereditary. We've known about it for a long time. GRCA has not adopted it as a requirement either, I do not know why. There are many carriers out there.
 

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Kate
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How about if people whose pedigrees closely are related to carriers start doing a 100 percent testing on everything they breed + public posting?

Similar to english lines needing to be more dilligent with testing for ichy because its more prevalent in those lines...

Looking on K9data, I see a lot of dog who have a lot of x kennel behind them. But that breeder has not been as loud and proactive about testing and posting public results... or not as loud as people whose lines are not impacted have been.
 

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where the tails wag
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My belief is that everyone who is breeding should test unless their dog is 1st generation of a Clear/Clear. And even then the dogs should probably be tested as things calm down a bit. I know I had 2 youngsters as well as my dogs that had been bred tested directly.



That said, if no one buys from an untested breeding, I think those whose lines are at risk would all begin to be tested. This is on every one of us to enforce. Untested parents, stay away from those breeders!



As a deadly serious DNA issue, there really is no excuse for any dog who is or will be bred to be untested at this point, the crunch of those of us with litters on the ground or bitches in whelp has eased. I know my breeders had all their breeding dogs tested even though they found only 1 dog back in their lines who may have been a Carrier via pedigree research -- this has been lurking in the breed a long time so no lines can be considered Clear unless directly tested



How about if people whose pedigrees closely are related to carriers start doing a 100 percent testing on everything they breed + public posting?

Similar to english lines needing to be more dilligent with testing for ichy because its more prevalent in those lines...

Looking on K9data, I see a lot of dog who have a lot of x kennel behind them. But that breeder has not been as loud and proactive about testing and posting public results... or not as loud as people whose lines are not impacted have been.
 

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Kate
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Sharon - am saying that I'm less concerned because I know this is not a factor in the dogs I own. There have been no reported cases + I'm friends with a lot of people who own relatives of my older dog + I've been friends with the breeder of my pup for going on 7 years now and I've been familiar with her dogs a long time before that too - people who would not be motivated to cover up for what's going on with a dog. But even breeders you can tell when a dog is shuffled out of sight and not mentioned again.

Am not saying I won't do the test on one of my dogs, but it's like ichy. I know it's in the breed... but it's not a factor in what I own.

Those litters out there where the parents or grandparents or cousins were impacted by this... holy crud. Those breeders need to have the spotlight on them if they are not testing their dogs and being proactive.

If your house is burning down, there's no point in standing on the curb and pointing at a neighbor's house and saying they need to have a fire extinguisher in there in case something happens. You need to tend to your own business first.

And of course, neighbors do have to take care of things too and prevent fires from happening - especially as there is a push from some out there to have more blended pedigrees or breeding back to old stock or whatever. Or heck, breeding to Canadian or European lines. If we don't know what's going to pop up and wing it... - yeah that's scary.
 

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where the tails wag
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@Megora

The problem is NCL is in our breed. It is not common granted, but it can not show up until 2 carriers are bred (even then some puppies may not be affected) and the only way we can prevent more puppies being born with this horrible disease is to test all goldens being bred.

We cannot say that the genetic material is Clear without the test being run. And we cannot know who we are breeding to without the test having been run. The test is 65$ at OFA and is included with Embark with their other tests. Why risk bringing affected puppies into this world or support breeders who do not run the test? We now have a test so we can avoid this particular risk.To me, this is even more important than hips, elbows, heart etc and the people who stepped up to the plate to spread the word through their own pain deserve their message being heard and acted upon.

I am actually very proud that my breeders jumped right on testing their dogs although the likelihood of having carriers seemed small given they have been breeding so long ... but the possibility did exist and therefore they tested.
 

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Kate
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We now have a test so we can avoid this particular risk.To me, this is even more important than hips, elbows, heart etc and...
Except it's not more important than hips, elbows, heart, and eyes... and cancer.

I'll give you a couple examples...

1. There's a breeder out there who has had SAS issues showing up in what she breeds. And this adds greater emphasis on this breeder not only getting heart clearances like usual, but doing echos and getting follow ups done on her breeding dogs - because she doesn't know where all this came from or how it got missed.

2. There's a breeder who bred to a foreign dog with the idea of improving health in her lines. And she ended up with a complete disaster with all puppies in that litter with very bad hips or very bad elbows or in some cases both. This is a breeder that did agility and obedience and field in addition to conformation, to it was a huge disaster. And you had puppies being put to sleep because they had so many problems. <= That's breeding to lines you don't know, btw.

3. There's a line out there where it started showing signs of problems a few years back with a "growing popular" sire dying young. Since then, there have been a couple other young deaths in his kids. And this is hemangio showing up way way way early.

4. I'll add this one just for fun - and it does not involve any clearances or cancer, but it does hint at problems. This was a dog who had an immune system meltdown with the dog nearly dying when he was 9 months old. This was not cancer, however, this dog did have something seriously wrong with his immune system just going haywire. Good thing his owners were fully loaded and able to take him to MSU for care, because he would not have pulled through otherwise. This dog still has problems and is a high risk for developing young cancer. <= And he's being shown and will likely be bred, btw.

^^^^^ All of these things scare the heck out of me, because you are not talking about rare conditions that do not behave in a predictable manner. And I'll say this, I don't care what these breeders are doing proactively... I'm not buying a puppy from them if they are breeding the same stuff down the road.... o_O

Elbows alone - you are talking about 10% of dogs tested having elbow dysplasia. That's just dogs being tested. There's a ton of dogs out there who live out their entire lives without getting their elbows checked and cleared or failed.

Not saying I'm not scared about NCL... but everything I read about this condition... the more I'm convinced that if it's as broadly in the breed as suggested, people have been removing dogs from the breeding pool perhaps even under misidentification (cancer or epilepsy). Or they must have been in order for it to be as rare as it is with all the close breeding that people do!

FWIW - I have no idea why people would pay $65 for a single test when they could pay $150 for a test that covers multiple things. <= I'm planning on testing Jojo down the road depending on if he gets all his clearances (one down, three to go).
 

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where the tails wag
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Being clear/normal on elbows in both parents does not mean the pups will not have issues. I sadly know this for a fact . SAS has the same issue although granted, cleared parents will probably not produce severe SAS.

Cancer and immune system issues are probably heavily influenced by environment and there is no test that I know of (yet) for either of these issues.

But NCL has science behind prevention, get the test and do not breed carrier to carrier. The 65$ test is best for those of us who have done the other DNA testing through other means. I did btw have Aedan's testing done through Embark since he had not had his other tests run yet (still have eyes to go....)
 

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Kate
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I did btw have Aedan's testing done through Embark since he had not had his other tests run yet (still have eyes to go....)
Heheh - I started with eyes.... the least stressful clearance.

Hips/elbows are always stressful for me because with Jacks - I had no idea that his hips were bad. Bertie, 24 months - I was convinced he had something wrong with his hips because he had pacing issues. And Jovi has beautiful movement, but I'm terribly worried about elbows with him. Not because there's problems (the dog is a 12 month old bulldozer when he's running - and he jumps with wild abandon and seems to think he needs to be in the air as much as possible). But he did get run over by a St. Bernard when he was a puppy. This caused an injury to his jaw (mondo expensive surgery/treatment this year) and you just have that thought in the back of your head that it could have hurt other things. A friend of mine had a puppy go running in the field with adult dogs and he came back limping. This dog was accidentally bred twice (golden girl and girlie of another breed broke out to rendezvous with him both times) and did not produce any bad elbows.

Because I'm not personally worried about Jovi having any of the dna related issues... I'm pushing that off to the end. There's no point if he fails hips or elbows or his heart, since it's purely a breeding tool at this point.
 
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