# Sticky  Neuronal Ceroid Lipofucinosis or NCL



## FTGoldens

_This was copied from another popular retriever website, which contained express permission to post to other websites:_

"For those not yet aware, a new (potentially serious) genetic condition is being investigated. Although it is particularly concerning to the owners and breeders of US field dogs, it has been identified in a N. American show dog and in a Russian bench dog. This condition is present in other breeds, but only recently become apparent in goldens. The condition is known as Neuronal Ceroid Lipofucinosis or NCL. It is nasty. Affected dogs begin to show clinical signs around 18 mos and by 2 their quality of life is such that they must be put down. Clinical signs are loss of sight, confusion followed by loss of motor skills and eventual paralysis.

"Fortunately it is a recessive gene and dogs are characterized as clear, carriers or affected. Breeding a carrier to a clear will NEVER result in an affected dog, but carrier to carrier could result in affected pups and potential heartbreak. As such, I believe it is extremely important for a large portion of the field golden population to be tested, much in the way we have been testing for ichthyosis. This is potentially far more devastating than a skin disorder. Even if you do not plan to breed your dog, it is still important to test as your dog's test can potentially identify carriers among your dog's progenitors and give researchers a larger sample pool to work with.

"Even as a rare condition, there are a few very well know dogs who have been identified as carriers. There is no reason whatsoever to avoid these dogs as part of a breeding program. Avoiding these dogs and other carriers would further tighten our already too tight gene pool. Intelligent decisions can be made with a simple test of the sire or dam.

"In the US, although Paw Print and Optigen are working to license the test, only the University of Missouri, Columbia has a test for the golden variant (CL5). The test costs $65 for a dog not displaying clinical signs. If you have the test done, please, please, please add your results to k9data.com (user managed web site for golden pedigrees) A searchable field has been added for the NCL variant."


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## Tahnee GR

Actually, Embark also offers the genetic test for this as part of their Golden Retriever panel. 

https://shop.embarkvet.com/products...7.1404472318.1547511814-1860368681.1540265569

“Neuronal Ceroid Lipofuscinosis (CLN5 Golden Retriever Variant) Embark SHOW MORE…
Multisystem (Multisystem)
Gene: CLN5 (Exon 4 Deletion)
Inheritance type: recessive
This form of lysosomal storage disease can cause juvenile to adult-onset neurologic signs, depending on the affected gene. While lipofuscin is commonly observed in the tissues of aged animals, dogs with NCL show an inappropriate accumulation of lipofuscin in the cells of the retina and the brain as early as 6 months and as late as 6 years, depending on the gene affected. Common symptoms reflect central nervous system malfunction and include partial or total vision loss, behavior changes, abnormal gait, and seizures. Symptoms usually progress slowly over time. While gene therapy trials in mouse models have proven promising, these are far from being used in the clinic.

A mutation in the CLN5 gene has been identified in Golden Retrievers with NCL. CLN5 codes for a protein important for the function of other lysosomal enzymes. Golden Retrievers with this form of NCL are reported to develop neurologic signs at 15 months of age.

Citations

Gilliam et al 2015”


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## Edward Lee Nelson

The easiest way I found was to go to OFA.org and click on DNA tests and follow the links. The staff will send you a kit and instructions to collect the DNA using a cheek swab and barcoded card-the card with the sample applied to it goes to the U of Missouri for testing and the OFA report back to you. This came from Liz Hansen at the University of Missouri Animal Molecular Genetics Laboratory.


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## FTGoldens

Edward Lee Nelson said:


> The easiest way I found was to go to OFA.org and click on DNA tests and follow the links. The staff will send you a kit and instructions to collect the DNA using a cheek swab and barcoded card-the card with the sample applied to it goes to the U of Missouri for testing and the OFA report back to you. This came from Liz Hansen at the University of Missouri Animal Molecular Genetics Laboratory.


That's great! I had heard that it required a blood sample.


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## Alaska7133

Link on the OFA website to order this test:


https://www.ofa.org/diseases/dna-tested-diseases/neuronal-ceroid-lipofuscinosis


Make sure to click that it is a golden retriever, there are other breeds and you don't want to get the wrong test. 


The disease has been found in both show and field lines. And lines outside of the US. Seems like nobody is immune.


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## Swampcollie

I wonder if this could be the underlying cause for many of the seizure issues this breed experiences. (Seizures are one of the symptoms this disease can produce.)


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## Alaska7133

It does give you pause on some of the young pups that died that I’ve known. Sometimes the diagnosis was cancer or seizures or something else undefined. Maybe it was NCL all along.

Now that NCL is a searchable field on k9data, I am sad to see the dogs that are listed as carriers. Already it’s so hard for breeders to find that right pairing with all the genetic tests already available. Now this will add more difficulty.


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## Sweese

Swampcollie said:


> I wonder if this could be the underlying cause for many of the seizure issues this breed experiences. (Seizures are one of the symptoms this disease can produce.)


I thought the same thing.


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## FTGoldens

Alaska7133 said:


> Now that NCL is a searchable field on k9data, I am sad to see the dogs that are listed as carriers. Already it’s so hard for breeders to find that right pairing with all the genetic tests already available. Now this will add more difficulty.


Fortunately, it's recessive ... so with conscientious breeding, it can be bred out without eliminating the desirable genes that accompany the undesirable ones.


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## Megora

Swampcollie said:


> I wonder if this could be the underlying cause for many of the seizure issues this breed experiences. (Seizures are one of the symptoms this disease can produce.)


Thank you for saying this because I seriously have huge problems with yet a NEW genetic condition being discovered out of the blue. Where I stand right now, I have little to no interest in testing for this because I have not heard of any dogs related to mine having any seizure or other neural type problems. 

However, if I knew of something - you bet I would be testing my dogs right now! And I'd have a cow about breeders not testing when they know there's been weird things in the lines that they are breeding. 

I guess where I would test is if I were interested in getting my dog out there as a stud? (not something I would do). I had somebody not long ago asking after my Bertie's clearances. She was less interested in the fact he had full clearances and more concerned about ichy. I understand breeders who are breeding carriers wanting to make sure any boys they use are clear. Makes sense to me. Would gather that this new thing is going to fall under the same system.


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## Prism Goldens

My two boys were tested a couple years ago via Embark. Both are clear, but I'm still going to do a couple of the girls with frozen semen behind them. I doubt my dogs have the gene, basing that on the fact I haven't lost any puppies under two to anything besides poisoning, choking, obstructions, hit by cars... in other words, obvious causes. But I figure now I've seen it is not a solely field pedigree issue, I should do the most recent frozen offspring who might reproduce... everyone else has had babies who are well past 2YO at this point.


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## Alaska7133

There is a facebook group you are all welcome to join to learn more:
https://www.facebook.com/groups/NCLGoldens/


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## DevWind

I was considering having the genetic panel done for my boy. I honestly haven’t decided what we are doing in the future other than obedience. I don’t have to wait until a certain age like I would for the other clearances, right?


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## ArchersMom

Abeille said:


> I was considering having the genetic panel done for my boy. I honestly haven’t decided what we are doing in the future other than obedience. I don’t have to wait until a certain age like I would for the other clearances, right?


Nope, you can submit DNA any time since it won't change. PawPrints is currently working on a test. If you need a full genetic panel I would go with Embark for now.


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## Swampcollie

Megora said:


> Thank you for saying this because I seriously have huge problems with yet a NEW genetic condition being discovered out of the blue. Where I stand right now, I have little to no interest in testing for this because I have not heard of any dogs related to mine having any seizure or other neural type problems.
> 
> However, if I knew of something - you bet I would be testing my dogs right now! And I'd have a cow about breeders not testing when they know there's been weird things in the lines that they are breeding.


I believe this again is like Ichthyosis, something that has been with the breed since the beginning but a genetic screening test is becoming available now. The most common neuro problem this breed experiences is seizures. Seizures can arise from many causes but this could well be one of the causes. If it is, we can with this test get this under control very quickly. 

Don't for one second believe this is limited to field pedigrees only. There are tested carriers already from non-field pedigrees.


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## AmberSunrise

My Finch is probably pregnant - wondering if we should do the cheek swab or wait until the pups are on the ground to go in for a blood draw. 



Since the testing is backing up and I have read priority is being given to tests for dogs who are related to known affecteds, perhaps waiting until the pups are born might be an option. 



Are any of you testing retired studs & dams? If their puppies are still doing well beyond 2 years old?


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## hotel4dogs

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.



QUOTE=Sunrise;7694548]My Finch is probably pregnant - wondering if we should do the cheek swab or wait until the pups are on the ground to go in for a blood draw. 



Since the testing is backing up and I have read priority is being given to tests for dogs who are related to known affecteds, perhaps waiting until the pups are born might be an option. 



Are any of you testing retired studs & dams? If their puppies are still doing well beyond 2 years old?[/QUOTE]


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## Prism Goldens

Since it is recessive, I think dogs who have been used at stud should be done at least. 
That said, the ICT gene one of my girls has came from frozen semen use and I like frozen but I am planning to test the two girls from frozen even though they have siblings well over 2 YO.


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## Megora

Swampcollie said:


> Don't for one second believe this is limited to field pedigrees only. There are tested carriers already from non-field pedigrees.


Oh - I never said that or meant to imply that. I have not looked into the issue close enough to know which pedigrees have been openly affected this time. 

Was just saying that I do not know any relatives with those kinds of problems. I know a lot of people with adult relatives of both my dogs. 

Beyond that I spoke to a lot of show people with either relatives of my dogs or close enough over the past weekend about this issue and these are people who would not lie - especially in private conversations, and they had never heard of this disorder (neurological issues in very young dogs) at all.


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## AmberSunrise

Are all Affected dogs symptomatic or is it too early to tell?

That is, can a dog who tests as affected live a full and healthy life?


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## Tahnee GR

Sunrise said:


> Are all Affected dogs symptomatic or is it too early to tell?
> 
> That is, can a dog who tests as affected live a full and healthy life?


According to the FB group, it is a fatal disease. I did see a report that a couple of dogs may have lived to 30/31 months but generally not beyond 2.

If you go onto the FB site and read the reports from people with Affected dogs, it is heartbreaking.

In people it is most similar to Batten’s disease.


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## AmberSunrise

I am amazed at the strength of the people documenting their experiences. But so grateful to them for sharing so this can hopefully be halted.

The breeder who posted about needing to schedule the euthanasia & necropsy for 2 of his dogs really underlined the devastation this causes. Goose hunting before the New Year to needing to schedule his farewells.


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## FTGoldens

Tahnee GR said:


> In people it is most similar to Batten’s disease.


Having both a medical school and vet school on campus, the University of Missouri - Columbia is a leader in comparative medicine research (a leading animal orthopedic researcher even moved to the med school from the vet school a few years ago), so they will apply information gleaned from their canine NCL studies to see if they are able to help the children affected with Batten's disease.

I've decided to have all of my current dogs tested, as well as the ones who have already passed away (their blood samples are at Optigen, which will transfer a portion of the samples to UM-C if requested to do so, for a small fee) since their genes are in the pool. A negative result is nearly as informative as a positive result in determining from whence it came.


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## Alaska7133

Testing is NOT backing up! Most people are getting results in under 2 weeks. Please don’t hesitate to test. The more information we have, the better. The Univ of Missouri is also looking for donations to help defer all these tests being completed.


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## AmberSunrise

Just ordered 3 Kits for my dogs who have been bred.

Faelan, Towhee & Finch. 

At this point we will wait to see the results before deciding if we should ask the sires for the Towhee & Finch litters to make sure they have the testing done (although I have no doubt they are at least thinking of it at this point to help the research if nothing else since Towhee & Faelan have all pups in excess of 4 years old)

Finch we shall see .. she goes for her ultrasound today so the sire should indeed be tested if she comes back as a carrier and is pregnant.

This is seriously concerning since Finch is hopefully pregnant and we didn't know about this condition ....

ETA pregnancy confirmed


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## AmberSunrise

Would it make sense to move this thread to the Health forum as a sticky?


I know I did not see it for awhile due to its' location and I might not be the only one.


Thanks


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## AmberSunrise

Can this thread be moved to the health forum as a sticky?


It is important and is not limited to field lines.


Thanks


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## Claudia M

I hope we will see more and more dogs tested. Meanwhile I hope there will be more studies on both NCL adult onset of NCL and Epilepsy. Kudos to Ron and Pat for getting this info out. Kudos to all who test to get a better perspective of what we are dealing with.


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## FTGoldens

Sunrise said:


> Would it make sense to move this thread to the Health forum as a sticky?
> 
> I know I did not see it for awhile due to its' location and I might not be the only one.
> 
> Thanks


Is there a way to copy and paste the entire thread to the Health Forum, while keeping it on this forum?
If not, maybe just copy my original post and put that over on the Health Forum ... that would be fine with me.
FTGoldens


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## rabernet

Would it be worth pet homes testing? To at least add that information to K9Data?


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## DevWind

There was a golden puppy at my dog club that we noticed had a limp at a young age. She had to be put down around her first birthday because the vet said she had a rare cancer. I wonder if this was the real problem. 



I've decided that for now, I'm going to wait for results from their parents. Winx's sire is clear already. Waiting for Pilot's sire and I'll decide when I know that result.


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## hotel4dogs

While it is not limited to field lines, I have to give a huge shout out to the "field community" for coming together to bring this to everyone's attention, and for sharing their heartbreaking stories so that this can be quickly and properly addressed.



Sunrise said:


> Can this thread be moved to the health forum as a sticky?
> 
> 
> It is important and is not limited to field lines.
> 
> 
> Thanks


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## Claudia M

rabernet said:


> Would it be worth pet homes testing? To at least add that information to K9Data?


Yes. Like with everything, the more data the better. I am testing (if I ever get the OFA kits in the mail which were ordered on the 16th ) Rose also and she has the OSS and cannot be bred. I hope to see this as being very rare and the incidence of it greatly reduced. The golden community is awesome. Most have gotten together with very few nay sayers at a $65 test.


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## debbie624

Alaska7133 said:


> It does give you pause on some of the young pups that died that I’ve known. Sometimes the diagnosis was cancer or seizures or something else undefined. Maybe it was NCL all along.
> 
> Now that NCL is a searchable field on k9data, I am sad to see the dogs that are listed as carriers. Already it’s so hard for breeders to find that right pairing with all the genetic tests already available. Now this will add more difficulty.


Where on k9 data do you find NCL as a searchable field? I just checked on k9 data for a golden from the breeder that I am on a waitlist with, and I don't see this anywhere. Please advise. Thanks.


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## Prism Goldens

debbie624 said:


> Where on k9 data do you find NCL as a searchable field? I just checked on k9 data for a golden from the breeder that I am on a waitlist with, and I don't see this anywhere. Please advise. Thanks.


Go to the search page for things other than name- its the second choice. Then scroll down to the bottom.


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## debbie624

I have to say all this is making me panic as I am waiting for a breeding to occur. I am on a waitlist for a Malagold and this is one more health issue we all have to worry about in our beloved goldens. It simply is not fair. I lost my Callie mid July suddenly at the early age of 8, 3 weeks following TTA surgery. I am heartbroken. I just want a healthy golden like everyone does. Thanks to everyone for sharing.


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## debbie624

Prism Goldens said:


> Go to the search page for things other than name- its the second choice. Then scroll down to the bottom.


Thanks Prism, but I'm sorry. I still dont see where you are referrring. Is there a way to screenshot and post? on page 1 of k9 data, I put in the dogs name in search box. on bottom of this page of the search box, it says view edit or test breedings
search for dog based on callname
view data base stats
learn more about k9data.

Is this the correct page you are talking about?


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## ArchersMom

Click on search based on call name. Then on the bottom on the next page should be a drop down menu for NCL status


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## AmberSunrise

If the breeding has not occurred, there should be time for the test results to be returned. Sire or Dam should be CLEAR ... one can be a carrier without issue.


If the breeding has occurred and *both* dam & sire are tested as CARRIER, the pups can be tested to ascertain status -- each pup would have a 25% chance of being affected, perhaps no pups would be affected, perhaps multiple could be ... but the 25% applies to each individual pup. 



Good luck and ask your breeder if she has the results for her girl. That should set your mind at ease if she is CLEAR


If all breeders test and do not breed Carrier to Carrier, it may be a 1 generation and out thing ... we will still need to test of course, but the gene pool should clear itself out if we do not limit the gene pool further than it needs to be ... that is, if your breeder's girl is CLEAR and the sire is CARRIER that is fine.





debbie624 said:


> I have to say all this is making me panic as I am waiting for a breeding to occur. I am on a waitlist for a Malagold and this is one more health issue we all have to worry about in our beloved goldens. It simply is not fair. I lost my Callie mid July suddenly at the early age of 8, 3 weeks following TTA surgery. I am heartbroken. I just want a healthy golden like everyone does. Thanks to everyone for sharing.


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## Claudia M

debbie624 said:


> Thanks Prism, but I'm sorry. I still dont see where you are referrring. Is there a way to screenshot and post? on page 1 of k9 data, I put in the dogs name in search box. on bottom of this page of the search box, it says view edit or test breedings
> search for dog based on callname
> view data base stats
> learn more about k9data.
> 
> Is this the correct page you are talking about?


See attached Pictures.


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## debbie624

Thank you Claudia. I did go to that page, entered call name and hit submit. The dogs full hame pops up but brings me to the standard pedigree page. Then I tried to enter call name and NCL status for each clear, carrier, affected. Then a page pops up stating query results with dogs name and again back to standard pedigree page. I must be missing something unless it means the dogs have not been tested.


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## ArchersMom

I think less than 100 dogs have results posted to K9data yet. This disease has just become known to be a problem recently and the University of Missouri is being bombarded with tests. I'm still waiting for results that the lab received last week and I've heard the turn around for testing through Embark is 5-6 weeks.


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## debbie624

okay, good to know. I did end up doing a blank search with just the NCL data and I saw a list of dogs within each category. Its so so sad. I hope that the breeder I am on wait list for will be willing to perform the tests on her sire and dam. It doesn't seem expensive from what I read in this thread so if worse comes to worse, maybe I should offer to pay for it on the sire and dam. Is this the right thing to do??


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## ArchersMom

debbie624 said:


> okay, good to know. I did end up doing a blank search with just the NCL data and I saw a list of dogs within each category. Its so so sad. I hope that the breeder I am on wait list for will be willing to perform the tests on her sire and dam. It doesn't seem expensive from what I read in this thread so if worse comes to worse, maybe I should offer to pay for it on the sire and dam. Is this the right thing to do??


The breeder should absolutely be doing the testing themselves. It's only $65 to submit to the University and around $179 for the whole Embark genetic panel. Just a drop in the bucket for any breeder.


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## debbie624

Okay, thanks. I will reach out to the breeder and see if she has done the tests and request her to do them if she has not. Because she is a long time breeder, she may end up saying she has had no incidences of this disease in her lines and feel is unnecessary. She's pretty straight forward so I will keep my fingers crossed she is open to it. Thanks again.


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## Prism Goldens

debbie624 said:


> Thank you Claudia. I did go to that page, entered call name and hit submit. The dogs full hame pops up but brings me to the standard pedigree page. Then I tried to enter call name and NCL status for each clear, carrier, affected. Then a page pops up stating query results with dogs name and again back to standard pedigree page. I must be missing something unless it means the dogs have not been tested.


Go to the second choice which starts w search by call name. 
click that. 
scroll down (do not enter call name) to the bottom, and click on NCL. That gives you whoever has been tested to be whatever you chose- clear, carrier or affected.


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## AmberSunrise

FWIW My breeder feels there is minimal risk in her lines, however the tests are ordered and we are testing.


If your breeder declines to test you may wish to choose another breeder. The stories that are being shared of bright & promising youngsters declining rapidly and horribly, what the owners & breeders are going through; how they persistently looked for answers and bravely stepping forward to help the breed should not be in vain.


This is a big enough deal that I feel any breeder needs to test if they care and are reputable. 




debbie624 said:


> Okay, thanks. I will reach out to the breeder and see if she has done the tests and request her to do them if she has not. Because she is a long time breeder, she may end up saying she has had no incidences of this disease in her lines and feel is unnecessary. She's pretty straight forward so I will keep my fingers crossed she is open to it. Thanks again.


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## hotel4dogs

I feel there is virtually no risk in Tito's lines, and I have traced all the currently reported carriers and affecteds and none appear anywhere in his pedigree.
His youngest litter is over 2, and everyone is fine. He's not being bred any more.
BUT
This isn't about Tito or about me. It's about the Golden breed and caring about more than your bottom line and $65 to test.
Providing information to researchers and breeders about who is clear is just as important as identifying carriers and affecteds, so I am doing the test.
Everyone who breeds or has bred needs to be testing. It's just the right thing to do.

Edit to add--and some time a dog that shocks everyone is going to turn out to be a carrier. Who knows, it could be Tito. 



Sunrise said:


> FWIW My breeder feels there is minimal risk in her lines, however the tests are ordered and we are testing.
> 
> 
> If your breeder declines to test you may wish to choose another breeder. The stories that are being shared of bright & promising youngsters declining rapidly and horribly, what the owners & breeders are going through; how they persistently looked for answers and bravely stepping forward to help the breed should not be in vain.
> 
> 
> This is a big enough deal that I feel any breeder needs to test if they care and are reputable.


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## AmberSunrise

Yes. This is not only for us but for the breed.

I perhaps did not need to test Finch, but she is pregnant and neither Towhee's nor Bang's status are yet known. 

Brady's status will be known once his sire's results and Towhee's are known (both are in the works) if they are clear.

Aedan's status will be known once his parents are both known (both in the works ) if they are both clear.

Faelan's litter is over 4, Towhee's youngest litter is just entering breeding age so over 2. All are doing well, But by testing them, their litters may be cleared by parentage.


I checked K9Data this morning and while Carriers may be overrepresented currently , I would consider 14% too high to be taken anything less than seriously.










hotel4dogs said:


> I feel there is virtually no risk in Tito's lines, and I have traced all the currently reported carriers and affecteds and none appear anywhere in his pedigree.
> His youngest litter is over 2, and everyone is fine. He's not being bred any more.
> BUT
> This isn't about Tito or about me. It's about the Golden breed and caring about more than your bottom line and $65 to test.
> Providing information to researchers and breeders about who is clear is just as important as identifying carriers and affecteds, so I am doing the test.
> Everyone who breeds or has bred needs to be testing. It's just the right thing to do.
> 
> Edit to add--and some time a dog that shocks everyone is going to turn out to be a carrier. Who knows, it could be Tito.


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## GoldenMom999

I agree that it's time to look for a new breeder if they do not test for this disease. For anyone who says that their lines are not at risk...

Anyone who has AFC Holway Barty OS FDHF
or
Mult. BIS & BISS Am/Can CH. Asterling's Wild Blue Yonder OS SDHF CGC 
or
BISS Am./Can. CH Gold-Rush's Great Teddy Bear OS SDHF
all share Eng. CH. Cornelius (UK, 28DD) way back. This dog is also common ancestor with the dog who tested affected from Russia. There are many, many common ancestors between field and show lines. The amount of data available at this time is so tiny that every breeder should wonder if they have a carrier somewhere.

$65 for a test is a tiny price to pay to keep a puppy from suffering and then breaking someone's heart.


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## puddles everywhere

*OFA's take on NCL*

Golden Retrievers
This neurologic disease becomes apparent at approximately 13 months of age. Often the first sign of disease is a subtle loss of coordination that is more apparent when the dog is excited. The extent of the incoordination gradually increases. The dog may begin pacing or circling when 15 months old and seizures often start before 18 months of age. Visual impairment and behavioral changes also start at that time. The neurologic deficiencies slowly but relentlessly increase and affected Golden Retrievers are often euthanized due to deteriorating quality of life when 30-to-35 months old.

According to this it's more like a 3 yr old threshold vs. 2.


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## debbie624

Thank you everyone for the feedback.


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## AmberSunrise

My apologies but I may have been too harsh below.


I would first ensure that your breeder knows about the issue (it is just really starting to be known), and then if she declines to test ask her why & point her to the sources that are detailing the problem ie; https://www.facebook.com/groups/NCLGoldens/?fref=nf


If they still decline then consider a breeder who is testing.





Sunrise said:


> FWIW My breeder feels there is minimal risk in her lines, however the tests are ordered and we are testing.
> 
> 
> If your breeder declines to test you may wish to choose another breeder. The stories that are being shared of bright & promising youngsters declining rapidly and horribly, what the owners & breeders are going through; how they persistently looked for answers and bravely stepping forward to help the breed should not be in vain.
> 
> 
> This is a big enough deal that I feel any breeder needs to test if they care and are reputable.


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## K9-Design

I want to be the fly on the wall when pet person tries to bully Connie into testing her dogs. Good luck with that.


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## hotel4dogs

If we're thinking of the same Connie she can't and won't be bullied, but I suspect she will be testing her dogs. 



K9-Design said:


> I want to be the fly on the wall when pet person tries to bully Connie into testing her dogs. Good luck with that.


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## Megora

K9-Design said:


> I want to be the fly on the wall when pet person tries to bully Connie into testing her dogs. Good luck with that.


I'm sure she will test her dogs - but I broke out laughing when I read this. 

Based on overhearing her talking about stuff at ringside more than once - there's no pushing her around. :grin2:


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## Maggie'sVoice

GoldenMom999 said:


> I agree that it's time to look for a new breeder if they do not test for this disease. For anyone who says that their lines are not at risk...
> 
> Anyone who has AFC Holway Barty OS FDHF
> or
> Mult. BIS & BISS Am/Can CH. Asterling's Wild Blue Yonder OS SDHF CGC
> or
> BISS Am./Can. CH Gold-Rush's Great Teddy Bear OS SDHF
> all share Eng. CH. Cornelius (UK, 28DD) way back. This dog is also common ancestor with the dog who tested affected from Russia. There are many, many common ancestors between field and show lines. The amount of data available at this time is so tiny that every breeder should wonder if they have a carrier somewhere.
> 
> $65 for a test is a tiny price to pay to keep a puppy from suffering and then breaking someone's heart.


For a lot of reasons I would never want a dog with Gold Rush in their lines. Over the years to many. Issues.


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## Maggie'sVoice

Megora said:


> I'm sure she will test her dogs - but I broke out laughing when I read this.
> 
> Based on overhearing her talking about stuff at ringside more than once - there's no pushing her around. :grin2:


Yeah I chuckled too. I've known Connie since 2004 as have spoken with her more then a few times while getting 2 dogs from her and would say she marches at her own pace, knowledgeable and confident with no BS.


----------



## hotel4dogs

I could be thinking of the wrong dog, but I think I recollect years ago on this forum a bunch of us traced all parts of our dogs' pedigrees way back and it was impossible to avoid GoldRush dogs. 
But I might be wrong. Try it just for fun.




Maggie'sVoice said:


> For a lot of reasons I would never want a dog with Gold Rush in their lines. Over the years to many. Issues.


----------



## hotel4dogs

Tito has Asterlings Wild Blue Yonder 6 or so generations back and Gold-Rush Teddy Bear around 10 or 11 back.
Results will be interesting.
And this is exactly what I mean by saying that some time, some dog is going to turn up somewhere as a carrier that's going to shock everyone.




GoldenMom999 said:


> I agree that it's time to look for a new breeder if they do not test for this disease. For anyone who says that their lines are not at risk...
> 
> Anyone who has AFC Holway Barty OS FDHF
> or
> Mult. BIS & BISS Am/Can CH. Asterling's Wild Blue Yonder OS SDHF CGC
> or
> BISS Am./Can. CH Gold-Rush's Great Teddy Bear OS SDHF
> all share Eng. CH. Cornelius (UK, 28DD) way back. This dog is also common ancestor with the dog who tested affected from Russia. There are many, many common ancestors between field and show lines. The amount of data available at this time is so tiny that every breeder should wonder if they have a carrier somewhere.
> 
> $65 for a test is a tiny price to pay to keep a puppy from suffering and then breaking someone's heart.


----------



## TheZ's

GoldenMom999 said:


> I agree that it's time to look for a new breeder if they do not test for this disease. For anyone who says that their lines are not at risk...
> 
> Anyone who has AFC Holway Barty OS FDHF
> or
> Mult. BIS & BISS Am/Can CH. Asterling's Wild Blue Yonder OS SDHF CGC
> or
> BISS Am./Can. CH Gold-Rush's Great Teddy Bear OS SDHF
> all share Eng. CH. Cornelius (UK, 28DD) way back. This dog is also common ancestor with the dog who tested affected from Russia. There are many, many common ancestors between field and show lines. The amount of data available at this time is so tiny that every breeder should wonder if they have a carrier somewhere.
> 
> $65 for a test is a tiny price to pay to keep a puppy from suffering and then breaking someone's heart.



This certainly caught my attention. How many Goldens are there out there that don't have at least one of these dogs behind them? Have to admit to being late to this discussion but how many cases of NCL have people seen and if a dog is past 3yrs. of age can one assume the dog will not develop this disease?


----------



## AmberSunrise

Dogs start showing symptoms generally before 18 months and most need to be euthanized before 2 years. 

There is an active FB group which has discussion, experts and perhaps most importantly a few of the owners and breeders of the currently known affected dogs. 

At least 5 litters with known NCL pups have been identified on K9 Data

DOB: 

01/31/2000 (1 dog)

9/11/2015 (1 dog)

1/23/2017 (2 dogs)

2/23/2017 (2 dogs)

12/8/2017 (3 dogs)



The above litters represent 9 affected dogs







TheZ's said:


> This certainly caught my attention. How many Goldens are there out there that don't have at least one of these dogs behind them? Have to admit to being late to this discussion but how many cases of NCL have people seen and if a dog is past 3yrs. of age can one assume the dog will not develop this disease?


----------



## joro32000

TheZ's said:


> if a dog is past 3yrs. of age can one assume the dog will not develop this disease?


This thread discusses juvenile onset NCL only, but an adult type of NCL also exists. The adult form can start at any age (similar to Kufs disease in humans), just a different gene mutation comparing to juvenile NCL.

I familiarized myself with this disease a couple of years ago as my Gatsby has weird seizures or some sort of muscle spasms that don’t look like ordinary seizures so his neurologist mentioned this disease as a possibility. Luckily 2 years later, we no longer think Gatsby has adult NCL as whatever is happening to him is not progressive. He is bright and alert with no cognitive decline.


----------



## Megora

joro32000 said:


> This thread discusses juvenile onset NCL only, but an adult type of NCL also exists. The adult form can start at any age (similar to Kufs disease in humans), just a different gene mutation comparing to juvenile NCL.
> 
> I familiarized myself with this disease a couple of years ago as my Gatsby has weird seizures or some sort of muscle spasms that don’t look like ordinary seizures so his neurologist mentioned this disease as a possibility. Luckily 2 years later, we no longer think Gatsby has adult NCL as whatever is happening to him is not progressive. He is bright and alert with no cognitive decline.


Have you gotten him tested? OR could you! That would be so informative.


----------



## joro32000

Megora said:


> Have you gotten him tested? OR could you! That would be so informative.


I would love to. But it was my understanding the 65$ test covers only the juvenile NCL with CLN5 mutation. I am not sure if this test is for adults also (Gatsby is 6). Does the CLN5 test cover the adult onset NCL?


----------



## Megora

joro32000 said:


> I would love to. But it was my understanding the 65$ test covers only the juvenile NCL with CLN5 mutation. I am not sure if this test is for adults also (Gatsby is 6). Does the CLN5 test cover the adult onset NCL?


I think it would be a good idea getting your dog tested.


----------



## AmberSunrise

I believe you are correct, this is the juvenile onset variant.


You may wish (if you haven't yet) to have Gatsby's DNA stored for research. That way it will be available if other dogs show similar symptoms and they start researching for possible DNA abnormalities. Health clinics will frequently have blood draws for this purpose (Look up golden retriever clubs in your area, see if they have Health clinic list under events and you may see something like CHIC DNA collection, usually free of charge)


In the meantime, it is good to hear that whatever 'it' is, it is not progressing 





joro32000 said:


> I would love to. But it was my understanding the 65$ test covers only the juvenile NCL with CLN5 mutation. I am not sure if this test is for adults also (Gatsby is 6). Does the CLN5 test cover the adult onset NCL?


----------



## Titan1

Sunrise said:


> Just ordered 3 Kits for my dogs who have been bred.
> 
> Faelan, Towhee & Finch.
> 
> At this point we will wait to see the results before deciding if we should ask the sires for the Towhee & Finch litters to make sure they have the testing done (although I have no doubt they are at least thinking of it at this point to help the research if nothing else since Towhee & Faelan have all pups in excess of 4 years old)
> 
> Finch we shall see .. she goes for her ultrasound today so the sire should indeed be tested if she comes back as a carrier and is pregnant.
> 
> This is seriously concerning since Finch is hopefully pregnant and we didn't know about this condition ....
> 
> ETA pregnancy confirmed


Sharon just letting you know 
Titan's test has been ordered...


----------



## AmberSunrise

Titan1 said:


> Sharon just letting you know
> Titan's test has been ordered...


Great news  I had no doubt


----------



## Alaska7133

The NCL test only is for that one NCL disease. There are approximately 15 different types of NCL. The researchers can only develop what they have in front of them. Necropsies are the gold standard for determining if this is a real case of NCL CLN5. Yes there have been other cases dating back to 2000. The litter in 2000, was determined by necropsy to be NCL. The owner/breeder of that litter is a vet, so she knew that she needed a necropsy to determine what was going on. Back then there was no DNA test available. But it was a red flag that this was a problem. It was unknown at the time if it was genetic. The owner of that dog, did put cause of death on k9data as NCL. She did not try to hide what happened. What is more concerning is the litter from 2015. That breeder has not listed those dogs on k9data as having NCL. That breeder has chosen to not come forward and share that information. We have no idea of the pedigree of that litter or who was the breeder, which is very sad. Univ. In 2017 we had 3 litters from Turbo Retrievers and Swamp Collie Golden Retrievers were wonderful at coming forward and finding out there was a DNA test available. They have worked hard to spread the word and let people know that this disease is out there and that all dogs need to be tested so we can find where the links are and try to find where this came from. Has this always been in the breed, has it been a mutation that popped up generations ago and nobody noticed? Is it something that only appears in certain dogs? Knowledge is power. Please test your dogs and share the information on k9data.


----------



## FTGoldens

Alaska7133 said:


> Knowledge is power. Please test your dogs and share the information on k9data.


AGREED!

I owned a couple dogs which were used for breeding purposes, one male and one female, both are now deceased. However, Optigen has DNA samples for both dogs and I, among others, have requested that Optigen send samples of their samples to University of Missouri ... Optigen is charging only $50 to send a sample.

FTGoldens


----------



## Alaska7133

FTGoldens said:


> AGREED!
> 
> I owned a couple dogs which were used for breeding purposes, one male and one female, both are now deceased. However, Optigen has DNA samples for both dogs and I, among others, have requested that Optigen send samples of their samples to University of Missouri ... Optigen is charging only $50 to send a sample.
> 
> FTGoldens



Good news, one of the sons of this breeding is Clear!


----------



## AmberSunrise

Because I mentioned my tests, I thought I would share the results (you can see the results once tested by checking your order status before you get the email)






Sunrise said:


> Yes. This is not only for us but for the breed.
> 
> I perhaps did not need to test Finch, but she is pregnant and neither Towhee's nor Bang's status are yet known.
> 
> Brady's status will be known once his sire's results and Towhee's are known (both are in the works) if they are clear.
> 
> Aedan's status will be known once his parents are both known (both in the works ) if they are both clear.
> 
> Faelan's litter is over 4, Towhee's youngest litter is just entering breeding age so over 2. All are doing well, But by testing them, their litters may be cleared by parentage.
> 
> 
> I checked K9Data this morning and while Carriers may be overrepresented currently , I would consider 14% too high to be taken anything less than seriously.


----------



## Swampcollie

Annie's test (my avatar dog) came back clear.


----------



## MillionsofPeaches

Proof came back clear today! <3


----------



## AmberSunrise

Aedan and Brady are now Clear by Parentage 


So all 5 who live with me are clear -- I cannot even express the feelings I felt when pregnant Finch came back as clear.


All of Towhee's kids are now Clear by Parentage
All of Faelan's kids are Clear by Parentage.





Sunrise said:


> Because I mentioned my tests, I thought I would share the results (you can see the results once tested by checking your order status before you get the email)


----------



## myluckypenny

Thanks to those that contributed to this thread! As a result of it I sent in my male (purely conformation lines) and he came back clear yesterday. This community is pretty special and the wonderful breeders that care so much for this breed are inspiring. Its tragic the way we had to learn about this horrible disease, but so many future puppies are being spared as a result!


----------



## hotel4dogs

Just got Tito's results and he, too, is clear. This isn't a surprise but is good news for his offspring, especially the 60+ who are out of bitches with very heavy field pedigrees.


----------



## FTGoldens

If you are following the progress of test results being posted on k9data, you'll see that the list of "clears" is growing rapidly, which is wonderful news for our breed. 
There are a few "carriers" which have recently been added, but no "affecteds" have recently been added [of course, the lists will not reflect those whose owners choose not to (or don't know to) list them on the website].
This is great news for our breed.
With the knowledge gained by testing, we can get a handle on the disease.
We owe a "thank you" to the people who quickly put a spotlight on this disease, which limited the devastating effects.
FTGoldens


----------



## Claudia M

Sent mine in on Tuesday for both girls. Hope got enough cells on the samples.


----------



## Claudia M

hotel4dogs said:


> Just got Tito's results and he, too, is clear. This isn't a surprise but is good news for his offspring, especially the 60+ who are out of bitches with very heavy field pedigrees.


Please keep in mind that this is not a field pedigree issue. It is a golden issue. I am happy to see the clears and the carriers! Hope for no more affected in any lines!


----------



## AmberSunrise

We owe a huge debt of gratitude to those who quickly shined a light on this issue and those sharing their pain and struggles who are putting themselves out there.

The people at Uof Mo working so hard at testing, the OFA and k9data who are working to get us up to speed with testing as well.

Thank you all.





FTGoldens said:


> If you are following the progress of test results being posted on k9data, you'll see that the list of "clears" is growing rapidly, which is wonderful news for our breed.
> There are a few "carriers" which have recently been added, but no "affecteds" have recently been added [of course, the lists will not reflect those whose owners choose not to (or don't know to) list them on the website].
> This is great news for our breed.
> With the knowledge gained by testing, we can get a handle on the disease.
> We owe a "thank you" to the people who quickly put a spotlight on this disease, which limited the devastating effects.
> FTGoldens


----------



## Alaska7133

Riot is clear. Waiting on Lucy.
Its so nice to see everyone getting on board.
The test is available in Europe too.


----------



## hotel4dogs

Absolutely, which is why I had Tito tested even though he's from all conformation pedigrees.
That said, to date the field lines have been much more heavily represented in carriers and affecteds. 

QUOTE=Claudia M;7699272]Please keep in mind that this is not a field pedigree issue. It is a golden issue. I am happy to see the clears and the carriers! Hope for no more affected in any lines![/QUOTE]


----------



## Claudia M

hotel4dogs said:


> Absolutely, which is why I had Tito tested even though he's from all conformation pedigrees.
> That said, to date the field lines have been much more heavily represented in carriers and affecteds.
> 
> QUOTE=Claudia M;7699272]Please keep in mind that this is not a field pedigree issue. It is a golden issue. I am happy to see the clears and the carriers! Hope for no more affected in any lines!


[/QUOTE]

One can only wish for the ones from 1985, 2007, 2015 to be posted.


----------



## hotel4dogs

And it may very well be that the reason field lines are so heavily represented is because they are, for the most part, the only ones doing the testing!


One can only wish for the ones from 1985, 2007, 2015 to be posted.[/QUOTE]


----------



## Prism Goldens

hotel4dogs said:


> And it may very well be that the reason field lines are so heavily represented is because they are, for the most part, the only ones doing the testing!
> 
> 
> 
> 
> One can only wish for the ones from 1985, 2007, 2015 to be posted.


[/QUOTE]

I don't think that's necessarily so. I tested. All the breeders I know are testing, and we are primarily conformation. If you look at all the clear dogs, those kennel names are primarily conformation exhibitors. I don't even see a carrier from a conformation type breeder other than that dog Charger ... not that that is indicative really, and I am certainly not casting stones at all- supposedly there is a conformation pedigree w an affected litter from 1985, but who knows if that was even really the same thing- there are a lot of storage diseases. And with unusual things, misdiagnosis is a possibility until now w a test. I think the entire community is very concerned, I have never seen so many people order testing so quickly with no argument that it needs to be done. It makes me proud.


----------



## hotel4dogs

You're quite right. I looked at the lists of carriers and affecteds, not clears.




I don't think that's necessarily so. I tested. All the breeders I know are testing, and we are primarily conformation. If you look at all the clear dogs, those kennel names are primarily conformation exhibitors. I don't even see a carrier from a conformation type breeder other than that dog Charger ... not that that is indicative really, and I am certainly not casting stones at all- supposedly there is a conformation pedigree w an affected litter from 1985, but who knows if that was even really the same thing- there are a lot of storage diseases. And with unusual things, misdiagnosis is a possibility until now w a test. I think the entire community is very concerned, I have never seen so many people order testing so quickly with no argument that it needs to be done. It makes me proud.[/QUOTE]


----------



## FTGoldens

Some pretty significant "clear" results arrived today:

FC AFC LaCrosse Max Q Jake 
FC AFC Firemarks Elusive One
FC AFC TNT's Explosion
FC AFC TNT's Stanley Steamer
AFC Emberain Rugby
FC AFC Glenhaven HTRS MN Baronet

FTGoldens


----------



## Claudia M

Both Belle and Rose are NCL clear!


----------



## TrailDogs

Speaker is also listed as clear now! This is all good news.


----------



## Jmcarp83

My puppy’s parents are both clear!!


----------



## DblTrblGolden2

We got our NCL test back today and we are clear!! Fireside Burning Giz-Moe, Moe to us. With everything we've had going on this was a relief.


----------



## Prism Goldens

DblTrblGolden2 said:


> We got our NCL test back today and we are clear!! Fireside Burning Giz-Moe, Moe to us. With everything we've had going on this was a relief.


Whew!! I am sooo glad for you! Go to his k9data page in put his results in. That'll feel proactive and encouraging to others who have the danger dogs we know of today
in the pedigree.


----------



## DblTrblGolden2

Prism Goldens said:


> Whew!! I am sooo glad for you! Go to his k9data page in put his results in. That'll feel proactive and encouraging to others who have the danger dogs we know of today
> in the pedigree.


Done and I also sent the panel into OFA. I'm not going to breed him, but figured it may help somebody. I know the breeder hasn't completed the testing yet. This is a big relief!!


----------



## FTGoldens

It's great to know that so many owners are getting their Goldens tested for NCL!
I'm hopeful that the prompt action and rapid publication of the situation has curtailed the proliferation of the disease.

While I believe this to be a widely held opinion, at the risk of pointing out the obvious I'll say it anyway: There is not any reason or justification to blame anyone for NCL's emergence ... NCL was previously known only be a select few and it was not seen as a threat to our breed or any element thereof. 

Since first hearing about NCL, I, among many others, became curious about where this dreadful disease came from. I know that there are speculators suggesting that they know ... heck, I've even developed my own opinion ... but at this point in time, I don't believe that anyone knows with certainty its inception. I anxiously await the veterinarians and statisticians who can give us some direction about where it came from and, more importantly, how to prevent, or at least reduce the risk of, another NCL-like situation without eliminating the ability to foster the passage of desirable characteristics.


----------



## TheZ's

FTGoldens, thank you for bringing this to our attention and starting this discussion. Thanks also to those who provided information on how to arrange testing. It caused me to have both Gracie and Jake tested since each had a parent whose status is currently unknown. Fortunately both are clear and their status has been recorded with k9data.


In mid-thread there is a post which mentions the names of 3(?) past prominent dogs and seems to suggest that they were carriers. I found this concerning since I think at least 2 of them are behind my dogs as well as many, many other Goldens. There was no explanation of why these names were mentioned. Without any support for the comment it seems inappropriate to mention their names in this discussion.


----------



## ArkansasGold

TheZ's said:


> In mid-thread there is a post which mentions the names of 3(?) past prominent dogs and seems to suggest that they were carriers. I found this concerning since I think at least 2 of them are behind my dogs as well as many, many other Goldens. There was no explanation of why these names were mentioned. Without any support for the comment it seems inappropriate to mention their names in this discussion.


I completely agree. To assume that those dogs are carriers because they have ONE common ancestor with a dog in Russia that was allegedly found to be affected is completely unfounded and stating it as fact in a public forum is misleading at best. If those dogs were carriers, then there would potentially be many many more affected and carrier dogs considering the line-breeding that was done on them - particularly in conformation lines. Each time a dog shows up in a pedigree, the chances of homozygosity increase. It's a serious assumption to make with zero facts, excluding the one common ancestor with a dog in Russia.


----------



## Catie Straiton

hotel4dogs said:


> 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.
> 
> 
> QUOTE=Sunrise;7694548]My Finch is probably pregnant - wondering if we should do the cheek swab or wait until the pups are on the ground to go in for a blood draw.
> 
> 
> 
> Since the testing is backing up and I have read priority is being given to tests for dogs who are related to known affecteds, perhaps waiting until the pups are born might be an option.
> 
> 
> 
> Are any of you testing retired studs & dams? If their puppies are still doing well beyond 2 years old?


[/QUOTE]




hotel4dogs said:


> 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.


----------



## Catie Straiton

While GRs are not my breed, I must applaud your breed community for addressing what I have just learned is a critical health issue for you. I Googled NCL after seeing comments in a FB group. The willingness to post test results, especially for Carriers, is refreshing. I am also thrilled to see intelligent and rational discussion on breeding Carriers to Clears and testing the resulting puppies! My breed is Great Pyrenees, and we too have a serious neurological condition, identified in 2015. The mutation has existed for decades, but was previously misdiagnosed or concealed by the breeders producing Affected dogs. Many breeders still refuse to test, and will not post results on Carriers.


----------



## AmberSunrise

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.


----------



## Megora

Sunrise said:


> 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.


----------



## AmberSunrise

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.



Megora said:


> 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.


----------



## Megora

Sunrise said:


> 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.


----------



## hotel4dogs

Tested, and clear!




hotel4dogs said:


> 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.


----------



## rrad1973

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?


----------



## AmberSunrise

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.





rrad1973 said:


> 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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## rrad1973

Thank you so much for your response, I appreciate it.


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## BlazenGR

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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## K9-Design

BlazenGR said:


> 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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## TheZ's

K9-Design said:


> 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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## BlazenGR

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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## Alaska7133

TheZ's said:


> 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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## Megora

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....?


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## Swampcollie

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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## BlazenGR

Swampcollie said:


> 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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## Alaska7133

Megora said:


> 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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## Megora

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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## Alaska7133

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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## Swampcollie

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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## TheZ's

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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## Alaska7133

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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## Rion05

K9-Design said:


> 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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## hotel4dogs

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


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## Megora

Swampcollie said:


> 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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## Swampcollie

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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## AmberSunrise

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.





Swampcollie said:


> 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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## BlazenGR

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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## Alaska7133

BlazenGR said:


> 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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## TheZ's

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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## Alaska7133

TheZ's said:


> 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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## Megora

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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## AmberSunrise

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





Megora said:


> 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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## Megora

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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## AmberSunrise

@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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## Megora

Sunrise said:


> 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.... 

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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## AmberSunrise

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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## Megora

Sunrise said:


> 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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## AmberSunrise

Bumping this thread for those who are looking for puppies and/or are new to the GR world.

The tests are available, and unfortunately most (if not all) of the pups whose owners brought this to our attention have already died. Never reaching adulthood or having a chance to.

And some of the ones now fighting due to their parents being bred before this issue was known are starting to go symptomatic . These owners know what they are now facing. This is simply not an issue that breeders or buyers should not take very seriously.

Some breeders are still burying their heads in the sand, so it is up to the puppy buyers, in addition to our golden community, to only buy puppies whose parents are clear/clear or clear/carrier ... no carrier/carrier and certainly no unknown NCL status

Test the breeding dogs and do not purchase puppies whose status is unknown. Please. Don't let these owners and dogs to have suffered in vain.


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## Alaska7133

Earlier this week I brought my puppy in for her next series of shots. My regular vet was out of state for a conference, so a fill in vet from far away was handling her cases. This fill in vet was about 40 years old and was an experienced vet. We discussed my future plans for my puppy. She jumped all over me for not spaying her soon, yet she knew nothing about NCL testing or OFA hip grading. I’m sorry when Animal Rights people become vets, they are just adding to the problem of diseases becoming a problem in all dog breeds by insisting that their only focus is spaying/neutering every puppy that walks in the door. Vets need to get educated now, not when they are trying to figure out what is causing the symptoms in a puppy or dog. I was very frustrated with this vet, her suggestions of spaying by age 12 months was ridiculous. So the problem isn’t just breeders sticking their heads in the sand, it’s vets who refuse to educate themselves beyond what HSUS and PETA feed them. We need to talk to our vets and find out what they do know about diseases in our breed. We should not be the ones educating the vets. Vets shouldn’t be nasty to people that are not spaying puppies, they should support breeders or those thinking of breeding with real information like NCL testing or other valid tests of health. OFA is not some mysterious organization, all vets should be well acquainted with their website and all their testing. From now on, I will make sure I visit only vets that truly have the future health of my puppies or dogs, and not just regurgitated information from HSUS and PETA and Animal Legal Defense Fund.


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