Neuromuscular disorder workup/research

$3,614 of $5,000 goal

Raised by 55 people in 66 months
5-15-14 - SEE TWO NEW UPDATES
  1.) Bringing you up to date on how the affected dogs are doing, and what more we know.... and, don't know....
  2.) Tyee's death announcement - Sept 23, 2008 - May 15, 2014 - a sad day here at the Tumnatki and the SierraWinds kennels - what it means for our research efforts.

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2013 -
Four and a half years ago (2008), Sheryl O'Rourke of SierraWind Siberians bred a litter from two of my Tumnatki dogs; two of the six pups developed a neuromuscular disorder that slowly takes away their coordination and muscle strength. At that time, the vets couldn't identify what was going on. One of those dogs is now almost completely disabled, though pain free and happy. The other stabilized and is able to work in harness to a limited extent.

We now have a second litterborn in July 2002, out of two Tumnatki dogs here with a very similar pedigree in which two of seven youngsters are affected. In both litters, those affected are males, however some of the male litter mates are normal. Again, none of the many vets that have either examined the pups or who have watched the videos of them, knows what this is. General agreement is that it is a progressive, degenerative neurological problem.

Sheryl & I have done initial workup, x-rays, exams and lab tests and have some answers to what is NOT going on. It is not - an orthopedic problem, neosporosis, toxoplasmosis, myasthenia gravis, or Alaskan Husky Encephalopathy (AHE). We have also ruled out some of the known neuromuscular disorders by comparing symptom profiles.

We have been in contact with Dr. Karen Vernau at the University of California at Davis and are scheduling to have complete workups done on some of the affected dogs. We will be presenting with dogs at U.C. Davis on Monday, May 6th - Wednesday, May 8th, 2013.

Doing these evaluations is going to cost more than we can afford by ourselves, but we both feel that finding out what this disease is and how it is transmitted is important, not just to our kennels, but to the Siberian Husky breed.

If we raise more than is needed for any reason, we will use the remaining funds to offer testing to others whose dogs may have this affliction.

We would welcome whatever amount you feel you could contribute to this effort. Information on the findings will be made available as we know more.

Gratefully,

Karen Yeargain
Tumnatki Siberians
AKC Racing Siberians
Prineville, OR

Sheryl O'Rourke
SierraWind Siberians
AKC Racing Siberians
Prineville, OR
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Time for another update to our search for neuromuscular disorder answers.......

Part one - there are others...... and ...... research funding drive is starting.

Part two - we have a 3rd neuro disorder litter here, this time with 100% of the pups being affected.
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Part one-
Dr. Karen Vernau has let us know that there are about 8 other cases of similar neuromuscular disorder cases in Siberian Huskies from other areas throughout the U.S. Our disorder is now being named SIBERIAN HUSKY POLY-NEUROPATHY. This is a distinct and different pathology than the similarly named Alaskan Malamute Poly-Neuropathy (AMPN), for which there now (as a result of breeders stepping forward and research being done) is a genetic screening test. Our affected Siberian Huskies test negative on the AMPN screening.

U.C. Davis and Dr. Vernau are teaming up with the Siberian Husky Trust to raise awareness and generate donations and/or grant funding for further research into finding the genetic markers of Siberian Husky PolyNeuropathy (SHPN), determining potential causes/triggers and, hopefully, finding effective ways of treating the disorder for those dogs who are already affected.... and, most importantly, developing a screening test that can be used to identify affected, carrier, and clear dogs in order to guide breeding decisions.

As soon as I have information from Dr. Vernau and Mary Uhlir at the SH Trust, I will post that here so that folks who want to donate to the overall fund at U.C. Davis may do so.

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Part two -
The most recent news from our kennel is not good. We have another litter where the Siberian Husky PolyNeuropathy disorder has raised its ugly head. This time, 100% of the offspring are affected.... yes 100% afflicted out of unaffected parents! This does make the case stronger for a genetic mutation having happened and being passed in certain parentage pathways, but it still doesn't make sense.....

The next step here is to raise funds to get the 5 living pups and one deceased pup from this litter down to U.C. Davis for thorough workups. This has been a long road so far, with more miles ahead. I am down to about 1 vacation day left on the books with mushing season, both training and racing, starting now.

I need to see when Dr. Vernau would be able to evaluate the pups, and find a way to get them down to Davis, CA and back. I will also need to raise additional money for this testing unless a SHPN research grant is funded by then. I am open to ideas on making their trip happen and will be very thankful for donations made toward their trip and evaluations.

I am attaching a video (from about 2 months ago) that shows some of our new pups. They are really well built, very person oriented, and totally sweet.... but, they have the neuro disorder...
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Part Three -
Yeah, I know, I didn't tell you there would be a Part Three...... Once any needed testing has been done with these youngsters, I am going to work at finding them companion homes with owners who are willing to take on a wonderful dog, but for whom the healthy lifespan is expected to be shorter than normal. Obviously this will take some very special people, but these dogs deserve to have as normal a life as possible, and they will give a full measure of love and pleasure while they are here. Lifespan would be expected to be anywhere from about 6 years up to normal SH longevity.

So, in this video, you will meet some of the "Mountains" litter...... we have one male, "Blue" for the Blue Mountains in Northeastern Oregon, the girls Faith, Hope & Charity for the names of the Three Sisters mountain peaks west of Bend, and Pisgah for my favorite mountain in the Ochocos to the east of Prineville.

Here is the first video of neuro litter #3....... :(

Karen
Neuro litter #3 born 6-7-2014
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It's been a while since my last update -

The struggle to keep Ariat from starving herself, continued for a good 2 months..... sometimes she would eat raw chicken breasts, sometimes she wouldn't... sometimes she'd eat cooked meat, sometimes she wouldn't..... she definitely had no interest in the frozen raw dog food that I tried. The effort was becoming exhausting and I kept thinking I should let her go. Then, after a long two months, Ariat became hungry again; four days before starting into her heat cycle! She's eaten consistently for the past two months and is holding a "slightly thin but holding" weight of 29#. What was going on, we may never know. But, Ariat is back to her normal house-dog self!

BIG HOPES DASHED - On June 7, 2014, our newest NEURO LITTER was born - My leader, "Navi", whelped 6 pups; one died after 24 hours due to a birth defect. Of the remaining 5, we had one male and 4 females.
By the time the pups were 11-12 weeks of age, I could see the less coordinated movement, the hesitation in their step, especially in the rear. ALL FIVE of the living pups have the neuro condition that we are fighting!

Here are two videos of what we are seeing....
Neuro Litter #3 - Hope & Charity
Neuro litter #3- the "Mountains" litter
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So much happening in the past month... Shelby, wonderful sled dog and mother of the first neuro litter, died a little over a week ago on June 16th at 13 1/2 years of age. She was fine on the preceding weekend, but yiped in pain on the 16th when Sheryl went to pet her belly. A lemon sized mass had appeared on her abdomen, near the loin; Shelby looked exhausted and unhappy. We took her in to our veterinarian that afternoon, with a hefty dose of pain meds on board. There, Dr. Schultz helped Shelby to leave her dying body and float freely to her next adventure.

Samples of specific organs were sent to U.C. Davis Veterinary Teaching Hospital where neurologist Dr. Karen Vernau and her crew are working to discover what they can about the neuro disorder.

Happening at the same time is a loss of appetite by neuro litter #2's affected female, Ariat. She is bright and active but not interested in food. A full workup at my vet's office did not find any abnormalities. Bloodwork, x-rays, and ultrasound are all normal.

At this point, Ariat has dropped several pounds and is about 3# under her correct weight of 30#, but her activity level remains good. She will eat small bites of raw chicken, but that' s about it. It's not pickiness, she just has no desire for food. Something has to change soon or she's going to be in trouble..... we're putting her on Prilosec and another stomach med to see if that fixes things..... time will tell.
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Part two of our May '14 update, is a mixture of sadness and of hope. Our most severely affected neuro-dog, 5 1/2 year old Tyee, died the other night.

Sheryl's dogs began setting up a concerned alarm bark about midnight on Wednesday; I went out to see what was up and found Tyee on the ground in a massive seizure. The dogs kenneled with him were bumping him with their noses and giving the alarm "yip"; they have always been so protective of Tyee and very careful not to hurt him.

The seizure, which none of the neuro dogs have exhibited previously, lasted about 20 minutes total and when it was done, Tyee's spirit had left his failing body.

Wednesday had been sunny and pleasantly warm. Sheryl had spent lots of time out in the kennel, just "being" with her dogs; she had brushed Tyee, petted him and told him she loved him (as us girl-mushers often do)..... he had spent the day with his usual smile, relaxing in the sun, enjoying his owner's attentions..... he ate dinner with gusto..... and, when it was his time, he left.

Both Sheryl and I spent some time with Tyee's body, feeling his spirit hovering close, wanting to know that Sheryl would be OK with him gone.

Now, with Tyee's days used up, he has left us with the gift of his body to see if it will give us the answers to the neurological disorder he was afflicted with. His body was packaged up at our vet and shipped overnight (at a cost of $600... ouch) to the U.C. Davis Veterinary Teaching Hospital. Dr Karen Vernau and her team will be doing a very detailed necropsy, looking for clues as to what this is, "where" the abnormality originated, how to help the four remaining affected dogs and, importantly, how we can prevent it from ever happening again!

SierraWind's Tyee - 9-23-2008 to 5-14-14 - he left us too soon, he left us just in time.
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$3,614 of $5,000 goal

Raised by 55 people in 66 months
Created April 22, 2013
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JW
$50
Jill Wilson
47 months ago

Praying that we can raise the funds to start the research that may bring some answers to this terrible disorder. My deepest sympathies on the occurrence in the latest litter. It is totally and utterly heartbreaking.....

$50
Anonymous
51 months ago
$150
Anonymous
51 months ago
DM
$20
Diana Miller
53 months ago

So sad about Tyee

KS
$200
Kim & Randy Smith
53 months ago (Offline Donation)

Thanks for the new donation, Kim & Randy; none of us could have known just how timely it would be...

$50
Anonymous
62 months ago
JD
$20
Jaimie Dengler
62 months ago

Donated by Origin Siberians

BG
$100
Becky Gibson
63 months ago

This donation is made in memory of Sue Colbert's CH SNOWBORN'S THE SKYS THE LIMIT

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