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where the tails wag
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One suggestion I would like to make, if I may.

Some golden breeders seem to be taking a 'not in my lines' attitude, and we cannot force anyone to test obviously.

What we can do, however :

> do not breed to any dog with an unknown status going forward

> do not welcome any puppy into our homes where we do not know (check OFA) that at least one parent is clear with all other clearances being in place

At least one rescue will begin testing their dogs under 2 and hopefully other rescues will also begin testing.
 

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Kate
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One suggestion I would like to make, if I may.

Some golden breeders seem to be taking a 'not in my lines' attitude, and we cannot force anyone to test obviously.
I hope people are not just checking the K9Data list of cleared and assuming that if some dog or some kennel names are not showing up that the breeders have not participated or their dogs have failed and they are hiding the evidence.

I know of a lot of golden breeders who have happily announced their dogs are clear (and I know they tested their dogs) - but they have not updated K9data.

Also, there's other people who have plans to test - but might be waiting a few months for the "rush" to quiet down.

Aside that - my first reaction on seeing the affected dogs was taking note of the parents, grandparents, and vertical pedigree behind them. Those dogs/breeders/kennels/relatives all had to be tested first off because among else - the danger of waiting too long could absolutely hurt them when it comes to current and future litters. It's a huge relief to see how many of these dogs are coming back as clear - because it seriously was scary seeing the pedigrees of the affected dogs. Talk about the heart of the field and obedience community!

Everyone else should test their dogs - if anything to prove that this is not as prevalent in the breed as it could be. <= And this is my strongest hope, because this breed has enough problems trying to focus on the cancer, longevity, hips, elbows, eyes, hearts, temperament, trainability, and structure issues in the breed.
 

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where the tails wag
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Why i mentioned verifying with OFA

This is also why I mentioned at least one parent should be Clear. If a status of a sire is unknown, but full clearances otherwise are posted to OFA the dog must be over 2 years old and beyond the onset of symptoms.

Moving forward, breedings with 2 untested dogs should be unacceptable to puppy homes.

I hope people are not just checking the K9Data list of cleared and assuming that if some dog or some kennel names are not showing up that the breeders have not participated or their dogs have failed and they are hiding the evidence.

I know of a lot of golden breeders who have happily announced their dogs are clear (and I know they tested their dogs) - but they have not updated K9data.

Also, there's other people who have plans to test - but might be waiting a few months for the "rush" to quiet down.

Aside that - my first reaction on seeing the affected dogs was taking note of the parents, grandparents, and vertical pedigree behind them. Those dogs/breeders/kennels/relatives all had to be tested first off because among else - the danger of waiting too long could absolutely hurt them when it comes to current and future litters. It's a huge relief to see how many of these dogs are coming back as clear - because it seriously was scary seeing the pedigrees of the affected dogs. Talk about the heart of the field and obedience community!

Everyone else should test their dogs - if anything to prove that this is not as prevalent in the breed as it could be. <= And this is my strongest hope, because this breed has enough problems trying to focus on the cancer, longevity, hips, elbows, eyes, hearts, temperament, trainability, and structure issues in the breed.
 

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Kate
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Why i mentioned verifying with OFA

This is also why I mentioned at least one parent should be Clear. If a status of a sire is unknown, but full clearances otherwise are posted to OFA the dog must be over 2 years old and beyond the onset of symptoms.

Moving forward, breedings with 2 untested dogs should be unacceptable to puppy homes.
Thanks for clarifying, Sharon - I missed the OFA mention and immediately thought of how people are not necessarily immediately updating K9data. Some of the young dogs being tested right now might not even be on K9data for all I know. There's a lot of breeders not visible on K9data who are taking this very seriously... or the very least, they are doing the Embark tests anyway. <= That's the route I'm going once I get all my ducks in a row.
 

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Tested, and clear!


Following this question with interest. I'm not opposed to having Tito tested after the backlog of people breeding gets cleared up. But I'm not sure it's necessary. He's not being bred, so far none of the carriers are within his lines, and his youngest litter is over 2 and fine.


PLEASE PLEASE PLEASE test your dogs. None of the POSTED Carriers are related to yours, but even breeders that most of the community consider to be reputable do not post. Goldens are not my breed, I breed Pyrs, but we have a neurological degenerative condition as well, that has been in our breed for at least 40 years but was only identified and made public in 2015. One of the best k own breeders in the breed, highest puppy prices, judges, considered by many to be the 'best', produced Affecteds and concealed it from the rest of the breed community for decades. Even now, they only post results on Clear dogs, when there is proof that they are producing Carriers. They do not mentor their puppy owners to test breeding dogs or post Carriers. Carriers are being homed, on Full registration, without sharing information on the condition that causes an otherwise beautiful dog to be euthanized by age 5. Data is POWER. As the owner of a dog AFFECTED with a testable neurological mutation, please test and post.
 

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Hi this is my first time here. I'm just learning about this, I appreciate all the information here! I have also joined the FB. page as well. I have an 8 month old golden and this kind of freaked me out. I did get in touch with my breeder and she informed me they will now look into testing for this in the future (she wasn't to aware of NCL). My boys parents have all other tests. She said no dogs in their lines have had any issues. So my question is this, if my boys parents have had 2 litters prior to mine and those pups are 2 and 3 years old, (19 pups together in those litters) none show any signs, would it be safe to assume that my boy is good?
 

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where the tails wag
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The news is still spreading -- but is getting out there thankfully.


There is a test available that costs $65 (OFA) that will determine the status of your pup if his parents have an unknown status -- since this is a recessive abnormality it can lurk for generations and/or multiple breedings of carrier parents before presenting in a pup as Affected -- fortunate since the chance of any pup being affected is relatively small, unfortunate since it can rear its head at any given time if the parental status is unknowingly 2 carriers.



The OFA testing : https://www.ofa.org/diseases/dna-tested-diseases
Scroll to the bottom for the NCL test, then select Retrievers -- a test kit will be mailed to you.



This test is also available as part of a panel from Embark


The above facilities are available in the US and I think Canada.



Hi this is my first time here. I'm just learning about this, I appreciate all the information here! I have also joined the FB. page as well. I have an 8 month old golden and this kind of freaked me out. I did get in touch with my breeder and she informed me they will now look into testing for this in the future (she wasn't to aware of NCL). My boys parents have all other tests. She said no dogs in their lines have had any issues. So my question is this, if my boys parents have had 2 litters prior to mine and those pups are 2 and 3 years old, (19 pups together in those litters) none show any signs, would it be safe to assume that my boy is good?
 

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We are now up to 12 dogs as affected in K9data, and 72 carriers. Some of the carriers have interesting performance/field x conformation pedigrees. We aren't at 2000 clear dogs yet (1662), but there are a lot of "clear by parentage" in that list also.

I encourage everyone to pay attention to "new" carriers who show up.
 

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the party's crashing us
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We are now up to 12 dogs as affected in K9data, and 72 carriers. Some of the carriers have interesting performance/field x conformation pedigrees. We aren't at 2000 clear dogs yet (1662), but there are a lot of "clear by parentage" in that list also.

I encourage everyone to pay attention to "new" carriers who show up.

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.
 

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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.

Looking through the list, which is getting very long, of "Clear"s, there are a number of very prominent conformation kennels that don't have even one dog on the list. It leaves you wondering whether they're: not aware of the issue, think it's not their problem, or have decided to keep their information private.
 

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I would like to think that it is a matter of they just haven't posted it to K9data. I will be trying to reconcile K9data against OFA, but I expect even fewer dogs to be on OFA. I do not understand the antipathy toward OFA to record data that is life-threatening to the future of this breed. Two dogs to OFA is one lousy entry in a dog show or agility trial, and much much less than a field event.
 

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Looking through the list, which is getting very long, of "Clear"s, there are a number of very prominent conformation kennels that don't have even one dog on the list. It leaves you wondering whether they're: not aware of the issue, think it's not their problem, or have decided to keep their information private.

Thank you for pointing this out. Conformation people need to get on board. Some of them think they only need to test their studs that are used heavily. I did test my show dog. Here's her pedigree. She was clear. She has most of the big show dog names in her pedigree. It doesn't clear her ancestors at all, it just shows she is clear. Pedigree: Wiseman Wildfire Grayling Fish On CD RA SHU JH WC
 

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Grumpy Old Man
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There are a lot of people who are testing dogs. There are lots that simply are not sharing the information on k9data. If the owner doesn't want to publish the results they received, they don't have to, and many are choosing not to.
 

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There are a lot of people who are testing dogs. There are lots that simply are not sharing the information on k9data. If the owner doesn't want to publish the results they received, they don't have to, and many are choosing not to.
I find that quite sad. This isn't an issue for which we have treatment or cure. Yes, everyone should be testing. Anyone buying a puppy should be asking for a clear test result from at least one parent, and then making an educated decision.

Breeders hiding behind the fact that "they don't have to" is, in my opinion, not a good long term solution to the problem as a whole. I have a huge amount of respect for Ron as a breeder for publicizing the issue and being completely transparent. He spent a lot of money testing dogs many generations back to not just determine where it might have come from, but also to help show other breeders that this isn't something new. It's been around for a long time, and we just happened to have more than a few impacted litters be whelped in a relatively short period of time.

I have spent a lot time looking at these pedigrees. We still have a huge amount of risk out there. Several popular stud dogs (in their day) could have propagated this in many directions. Some of them probably have DNA available via Optigen. It's not about blame. It's about getting the word out so that no more affected puppies are born. We still have huge holes in some pedigrees where we can't easily identify the possible carriers.

Again, this isn't juvenile cataracts or a bad hip or elbow. This kills dogs at the prime of their youth.
 

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So... curious....

The noise on NCL has died down quite a lot.

Is that because people are finding it's not as bad as they expected or....?

Megora, I find your statements as rather insensitive.
NCL is deadly. It kills all affected puppies. Those are the facts.
So no, "it's not as bad as they expected" is NOT a true statement.
It is as bad as anything can be that kills all affected dogs.


I'm sad that more people aren't testing. Like ichthyosis and PRA, the field people got on board right away and began testing. For whatever reason the show people have been very resistant. Some have tested their heavily used studs, a lot have not, or at least they aren't sharing the information. I did test my show dog and my field dog. Both are clear. My show dog is spayed, so it doesn't matter, but now her breeder knows. My field dog hopefully will be bred, and if we find a nice carrier bitch to breed to, I'll be happy to breed him to a clear or carrier bitch. Knowledge is power.
 

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Kate
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Stacey - I think at the time, I was really just wondering if people had found out anything further or if the excitement died down if (hopefully) people discovered it wasn't as prevalent as feared. Truly I hope that is the case.

For a while there you could not go on any online groups without seeing NCL everywhere and right now - most of that is died down or gone silent.
 

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I don't think we have a real solid knowledge of how prevalent NCL is.

We know there are current affected litters on the ground. Those breeders have chosen to not put their information on k9data, which is very disappointing.
We know there are carriers listed from show lines, but not many.
Why people are choosing to test and not share data, I'm not sure. Knowledge is power.


Are there more carriers out there? Absolutely. Will we find the thread?
Is this a new disease, is this an old disease? I think a lot of people would like to know.


At the Univ of Missouri they are working hard to find out more about it.
The owners of affected dogs that are alive still, are spending a great deal of time and effort to have their dog assessed medically throughout the process of the disease. These dogs will be able to tell us more. Their bodies are being donated for testing.


How many other diseases like NCL are lurking out there and we just haven't figured out what exactly they are? I think we've all owned or know of dogs that had diseases that didn't make any sense and were never defined. I had a bitch die from a really weird neurological problem at age 7. I wish now that I had her blood and tissue removed and sent to the Univ of Missouri for testing. I'm sure she didn't have NCL (she was too old), but it was a really weird neurological problem that might be a key to something else. That's how PRA was discovered. An owner had a dog with an eye problem. She was the first dog to be diagnosed with PRA genetically. Her owner was the hard push for goldens to have PRA testing. Without her, we wouldn't have the testing or even be aware there was a problem.


We need to stick together and figure things out.
 

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Grumpy Old Man
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Lets face some hard truths here. The Genetic test for this problem with this breed is a new thing. As breeders test and learn what their dog carries or doesn't carry, it can be literally devastating to their breeding program as well as the breeding programs of others that they have interacted with. Then there are the puppy buyers who may have a pup that simply doesn't have the long life in front of it that they were expecting. Such communications are better dealt with on a personal level rather than in a public venue.

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.
 
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