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Teresa

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Reply with quote  #26 

Thank you Steve. This was one of my biggest concerns. I know that Dr Henthorn has been instrumental in helping those with affected boys and their relatives get signed up for free blood/urine testing. She has much of the data for those already involved in the study and I would hate for one hand to not know what the other hand is doing, so to speak. I know she's been in contact with Bill Newman and various breeders in this quest. T


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Reply with quote  #27 
Our current Cystinuria Grant #919 as well as our past Cystinuria Grants with UPenn have been funded through the AKC Canine Health Foundation.  They find other Breed Clubs and Sponsors to pool funds and resources to help cover these grants and they match the funding through their general fund.  This is much more economical for the various Breed Clubs and our dollars go a lot further this way.  By going through the CHF we also have a contract that lays out what work the researchers will do with the amount of money given for a specific project in an assigned date range.  The contract tells the principle investigators when they have to submit progress reports, the research is kept confidential, and the progress is monitored by peer review.  This is all done at a very high level in all areas.  This also allows us to work with the top researchers in their respected fields…

To date we have been able to fund our various Health Research Projects through the AKC/CHF Mastiff Donor Advised Fund, the MCOA Charitable Trust, the Mastiff Club of America, the Florida Association of Mastiff Exhibitors (FAME), other Parent Breed Clubs & Mastiff Regional Clubs, the Northeast Ohio Mastiff Picnic, various Universities, the National Institute of Health, private individuals from the Mastiff Community such as Dr. Bill Newman, Joe & Carla Sanchez of Southport Mastiffs, and Jeffrey & Karen Flocker of New Beginning Mastiffs, as well as outside agencies such as the Penn Genomic Frontiers Institute (of the University of Pennsylvania), Broad Institute of Harvard and MIT, OptiGen, and the Baker Institute of Health at Cornell.  We are very grateful to the Mastiff Community & the Research Community for their continued financial support which is necessary for future health studies!
 
For 2008 the MCOA spent $13,000 in health grants through the AKC CHF and the actual grant amounts that we supported totaled $551,559!  That's over half a million dollars, so obviously we are very careful with the funds that we collect and how we use them...  Those funds covered health research in Cystinuria, Cancer (Osteosarcoma and Lymphoma), and Crutiate Ligament Rupture.

The Mastiff Club of America’s Charitable Trust has set up a restricted account to be used for Cystinuria research, discounted clinics, and educational outreach...  If anyone would like to send a tax deductible donation specifically designated for Cystinuria Programs, please write the checks payable to: "The MCOA Charitable Trust" and write “Donation to the Cystinuria Restricted Account” in the notes section and mail the donation to:
MCOA Charitable Health Trust
C/O Anne Heyob
1345 Murphy Hill Road, Lot 182
Langston, AL 35755
 
We have had several Cystinuria Grants over the past 10+ years with UPenn, but as we've found out, Cystinuria in Mastiffs is much more complex than originally thought and it is going to be very difficult to crack the code to the puzzle without the help of Mastiff breeders and owners.  When I discussed this with Dr. Acland at the Baker Institute at Cornell he told me the best tool a researcher can have is to work with the people that know their dogs and the disease in their breed the best, the Breeders and the Parent Clubs...  True to this statement, UPenn is dependent on us sending in blood samples and sharing information regarding our breeding programs and any knowledge we have regarding Cystinuria in our dogs and in their offspring…

Right now Paula Henthorn at UPenn needs more blood samples from Cystinuria Positive dogs in order to run more SNP chips and do further genome mapping.  The current grant is already funded and paid for.  It was partially funded through the Penn Genomic Frontiers Institute (of the University of Pennsylvania), and the Mastiff Club of America has already funded our committed amount through the AKC CHF.  With the current Grant Dr. Henthorn can run more samples for genome mapping, but she needs more DNA samples from affected dogs and their close relatives.  So, even more than money right now, she needs more DNA in order to find the genetic component of this disease in Mastiffs. 

Yes, we need to keep collecting more money for the next phase of research which will be needed once the current Grant is complete.  As mentioned, we can do that through the MCOA Charitable Trust’s Restricted Cystinuria Account and/or through the AKC CHF Mastiff DAF.  Cystinuria research continues to be a top priority among the MCOA Health Committee.  We have been encouraging Cystinuria Urine Testing, doing fund raising and asking for blood samples on affected dogs for over 10 years now and we don't plan on giving up anytime soon.  We need a DNA test for Cystinuria in Mastiffs and we need better diagnostic tools and treatment options and we can't do it and the researchers cannot do it with out blood from affected dogs and their close relatives.  

In addition to donating specifically to Cystinuria Research in Mastiffs, it is very helpful (especially with our larger donors) when they can also send additional contributions directly to the AKC CHF for their General Fund in order to help the CHF match funding on Grants like ours and it is also important and helpful when they can send contributions directly to the Universities and Researchers to help support their over head… and as mentioned above, the Penn Genomic Frontiers Institute is helping fund the SNP Chip Genome Mapping so I'm sure they'd love some donations as well…  Everyone needs the money, but in addition to that the research cannot continue without more blood samples!
 
Please remember when donating through the MCOA Charitable Trust and the AKC CHF your donations are tax deductible as allowed by law.  
 
Thanks for your help,
 
Anna May

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Reply with quote  #28 
I forgot to mention that in addition to blood, UPenn also needs us to participate in their Diet Study to help them better understand the influence diet has with Cystinuria in Mastiffs and hopefully it will lead to better diagnostic tools and treatment options.

Thank you,

Anna May

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margelutz

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Reply with quote  #29 
  • Total male dogs tested: 585
  • Total female dogs tested: 542
  • Positive male dogs: 58 (10%)
  • Positive female dogs: 1 (.18%)
 

Hi Anna May
Can you telll us how these numbers above have changed ??

How many Male Dogs to date ,have been found Postive ?
How many Total tested ??

Thanks Marge

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Reply with quote  #30 

UPenn Nitroprusside Urine Screening Tests Statistics:

 

Nitroprusside testing stats for 2008

Total of urine nitroprusside tests - 324 (231 males, 93 females)

Number of Positive nitroprusside tests - 32 (all males)

Number of blood samples collected for DNA – 64

 

Cumulative stats through March, 31, 2008:

 

1564 total mastiffs tested (plus another 2 of “unknown” sex)

851 males with 76 positive

713 females with 1 positive


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Reply with quote  #31 
Regarding the Cystinuria Stats, please keep in mind that these are based on the Nitroprusside Urine Screening results through UPenn.  We do not have stats on dogs that were diagnosed through cystine crystal or stone formation which is typically how dogs are diagnosed unless the owner is doing proactive health testing.

Anna

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Reply with quote  #32 
I scanned through this thread and didn't read every message, but tried to read a little of most...  Thank you Steve for trying to grab the bull by the horns and get things rolling! 
 
On the other hand, things are rolling behind the scenes, but our big wish list is to get more blood from more affected dogs which will allow Dr. Henthorn to run more SNP Chips.   They do not need the dog to run the SNP Chips, just the dog's blood which they extract the DNA and use the SNP Chip technology to run the full genome mapping.  Pretty advanced, state of the art stuff!
 
Our next wish list items are to have Mastiffs and other breeds participate in UPenn's Cystinuria Diet Study, to have owners donate their C+ dog's kidneys when they pass away (regardless if they ever formed stones or not), and continued financial support to fund the next round of Grants for the next phase of research...  Of course we also hope and pray that the Mastiff Community will continue to NP Urine Screen their Mastiffs regardless if they are going to be bred or not and share the results with the dog's breeder and the sire's owner and participate in the research...
 
I apologize for not being actively involved with the various Mastiff Message Boards, but I am extremely busy and am having a hard enough time keeping up with my own private e-mail...  We are working on a complete overhaul of the MCOA Website's Health Pages and a ton of other stuff....  So if anyone needs to reach me you can try calling me.
 
Thank you,
 
Anna May

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Crossroads

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Reply with quote  #33 
Anna May,

Thank you for the current information and statistics.  It's nice to know there are people working behind the scenes on this.  You clearly have a very firm grasp of all the aspects involved with fund raising, grants administration, and dealing with the researchers.  Thank you!!!!

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Mitzi

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Reply with quote  #34 
Marge, we will be collecting the samples and submitting them at the Ohio Mastiff Picnic......Marge, do you want to help publicize this? We'd LOVE to get you on board!

http://ohiovalleymastiffs.com/

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margelutz

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Reply with quote  #35 
Marge, we will be collecting the samples and submitting them at the Ohio Mastiff Picnic......Marge, do you want to help publicize this? We'd LOVE to get you on board!

http://ohiovalleymastiffs

 
Sure ill be happy to send it to other lists :>)
Marg e

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steveoifer

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Reply with quote  #36 

Dear Mr. Oifer,
I am glad to hear about your responses which clarify things for me and are concur with what I thought were your intents. Also I believe reaching out beyond the club is a great idea and may help greatly.
We do not have the funds for the genome or other project for mastiffs, much of the funding from the AKC Canine Health Foundation has been used for the original candidate genes which were ultimately excluded. We have been able to do a small number of mastiffs genotype and as genetics and phenotype appear complex not at all enough. While there is $10,000 from the AKC left this is for all the breeds with cystinuria we are working on and nowhere near what we need. A few additional samples would however also be helpful if we get cystinurics and its parents.  It is nearly unheard of that only males are affected and no females are affected when being offspring from an affected male and a female that also produced cystinurics. However, the idea of x and also y chromosomes are considered and included in our studies. In humans this is strictly an autosomal-recessive disease.
Hope this helps and of course I am available to chat as well to make things clearer.
Kind regards
Urs Giger


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"Above all, a uniform type should be aimed at by breeders and uniformity of type can only exist in a proportionate ratio in the purity and distinctiveness in any breed"!.........M. Moore
"If breeds did not adhere to a specific shape, form, and colour range, or if breeders disregarded this blueprint, the breed would degenerate to the point that it would hardly resemble the breed at all. Selective breeding does not just create breeds- it preserves them as well." Breeding purebred dogs inherently means accepting limitations on your freedom to just breed anything...Catherine McMillan
" A reinforced consolidation of the American and British standards could be the basis for restoring our breed to the gladiatorial glory of its ancient past, in capability if not in usage".....Norman Howard Carp-Gordon
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steveoifer

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Reply with quote  #37 
I was on the phone with Anna May this morning for quite some time.

We discussed many things at length regarding funding.

She said that she would come back and post a clarification re that $500,000 number.

What Giger said is factual and money is needed.

Plain & simple.

I have also e-mailed Bill Newman and will discuss the Danny Fund with him as well in this regard.

I'm looking to see what's the best route for contributing $$$ and seeing that it gets to the best place as quickly as possible.

Blood samples are also needed, as this research cannot proceed without blood from Mastiffs.

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For the betterment of the breed

"Above all, a uniform type should be aimed at by breeders and uniformity of type can only exist in a proportionate ratio in the purity and distinctiveness in any breed"!.........M. Moore
"If breeds did not adhere to a specific shape, form, and colour range, or if breeders disregarded this blueprint, the breed would degenerate to the point that it would hardly resemble the breed at all. Selective breeding does not just create breeds- it preserves them as well." Breeding purebred dogs inherently means accepting limitations on your freedom to just breed anything...Catherine McMillan
" A reinforced consolidation of the American and British standards could be the basis for restoring our breed to the gladiatorial glory of its ancient past, in capability if not in usage".....Norman Howard Carp-Gordon
"I can live with doubt, or not knowing, rather than to have answers that might be wrong"...Richard Feynman
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annagmay

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Reply with quote  #38 
As Steve mentioned, further Cystinuria Research (the next phase) does and will require more funding.  As mentioned in previous posts and on other discussion threads, people can send in donations directly to the MCOA Charitable Trust's Restricted Cystinuria Account or they can send in donations directly to the AKC CHF Mastiff Donor Advised Fund and then when the future Grants become available to sponsor, the money will be released to the next phase of Cystinuria Funding...  If individual donors would like to donate $2500 or more on the next grant, you can have your name or dog club's name listed as an official sponsor on the grant.  You can also donate directly to UPenn as Steve mentioned, especially if you are a large contributor.

The current Cystinuria Grant 919  Principle Investigator Paula Henthorn was a one year grant that the MCOA sponsored through the AKC CHF at $48,924 and the MCOA paid $3000 for our share of that funding.  As previously mentioned, the balance of the funding was funded from a variety of sources including private individuals and other breed clubs...  The funding for the SNP Chip Genome Mapping was generously funded separately through the Penn Genomic Frontiers Institute (of the University of Pennsylvania). 

Dr. Paula Henthorn has just asked for a no cost extension on Grant # 919 in order to run the next series of SNP Chips (Complete Genome Mapping) and did not ask for more money on this extension.  On the other hand, she is asking for more blood samples from C+ dogs.  To verify the dogs being used for DNA Genome Mapping are indeed Cystinuria positive, UPenn is only using samples from dogs that have either formed cytine crystals or stones or that have tested positive through the NP Urine Screening test and the Cystinuria Positive Status is confirmed through Quantitative Amino Acid testing with a result of elevated COLA.  She is asking for more blood from C+ Mastiffs in order to run more SNP Chips on Mastiffs!
 

The rest of the grants that the MCOA Sponsored through the CHF were for Oesteosarcoma (2), Lymphoma, and Crutiate Ligament.  The remaining $538,559 was paid on the same research projects that the MCOA supported, but that funding came from other Dog Clubs, individual sponsors, and the CHF....  So, the MCOA only donated $13K and got a much bigger bang for our buck by collaborating and networking with others through the help of the CHF.

 

We have no idea how much the next phase of research will cost for Cystinuria and we are continuing to collect money in order to be prepared to fund it when it is available.  We are also asking for more blood samples from C+ Mastiffs!

 

Thank you Steve for publically soliciting more funding for Cystinuria Research and asking for more blood samples!  Your help is greatly appreciated!

 

Anna


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Reply with quote  #39 
Cystinuria in Mastiffs is a COMPLEX Disease and if UPenn can crack the code on this, it may lead to future breaks in other complex diseases such as MS, Mental Illness, Diabetes, Breast Cancer, Addiction, Compulsive Obsessive Behaviors, etc...  The list is almost endless. 

If anyone is interested, they can do a search on this Message Board and on Linda Greason's Message Board with user name: "annagmay" and key word "cystinuria" and select "posts" and you can see what is going on with Cystinuria research in Mastiffs and why it is taking so long to find an answer....  We are learning as we go and we can only move forward with the help of the Mastiff Community and individuals that care!  Right now the MCOA Website is being updated and the Health Pages are going to be completely redone, so hang in there and watch for updates.

Please note that the donations collected for Mastiff Health Research are being used wisely and we are very careful with them.

Anna May


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Reply with quote  #40 
Cystinuria Research AKC CHF Grant 919

Cystinuria Genetics: Gene Mapping, Pedigree Analysis, Mode of inheritance, etc...  Dr. Paula Henthorn, Principle Investigator

Cystinuria NP Urine Screening and Cystinuria Quantitative Amino Acid Testing, Veterinarian Consultations, Molecular & Pathological Studies, Diet Study, etc....  Dr. Urs Giger

UPenn Veterinary Hospital Molecular Laboratory = Cystinuria Clinics, and all of the above, etc... Angie Huff-Erat

This is a TEAM EFFORT with all three individuals and others working together to try to figure out the Cystinuria Puzzle...

Anna

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Reply with quote  #41 
In my opinion, if UPenn is willing to run complete full genome mapping and Quantitative Amino Acid tests on all the Cystinuria positive Mastiffs that submit blood and urine for their Cystinuria Research Projects then our Cystinuria donations are going directly to Cystinuria Research on Mastiffs at least 10+ fold!

I greatly appreciate everyone's donations and I hope the majority of you that are helping can see that our money is being used very carefully and wisely.  I also greatly appreciate having Steve get on board to bring the fund raising to a higher level and for graciously offering to pay shipping expenses for those that have Cystinuria positive Mastiffs and are willing to participate in the research and submit blood samples to UPenn...

Anna May

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Teresa

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Reply with quote  #42 

Anna...thank you and all the others working so diligently behind the scenes to get the research done. I, for one, have learned through listening, that it's a much more complex process than I originally thought...and I'm NOT talking about the research; I'm talking about the research process. Cooperation from ALL avenues is important. If breed clubs work hand in hand with the AKC and private fund raising efforts, we can make vast progress. If, by putting our dollars in WITH OTHER breeds, we can find cures for a variety of illnesses, it benefit ALL. I do understand that those of us not integrally connected in the system may feel at times things are not getting done, but I'm learning that's just a poor perception. The wheels are turning and things are getting done. From my understanding, the process is already in the works to better disseminate information...Steve, help me on this one...what movie was the line "Patience grasshopper, patience" from?


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Reply with quote  #43 
Teresa,

I would ask David Carradine, but I'm told he's not available!

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"Above all, a uniform type should be aimed at by breeders and uniformity of type can only exist in a proportionate ratio in the purity and distinctiveness in any breed"!.........M. Moore
"If breeds did not adhere to a specific shape, form, and colour range, or if breeders disregarded this blueprint, the breed would degenerate to the point that it would hardly resemble the breed at all. Selective breeding does not just create breeds- it preserves them as well." Breeding purebred dogs inherently means accepting limitations on your freedom to just breed anything...Catherine McMillan
" A reinforced consolidation of the American and British standards could be the basis for restoring our breed to the gladiatorial glory of its ancient past, in capability if not in usage".....Norman Howard Carp-Gordon
"I can live with doubt, or not knowing, rather than to have answers that might be wrong"...Richard Feynman
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Mitzi

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Reply with quote  #44 
Marge, all money that we collect for the health and rescue funds at the picnic goes directly to Kim Fish (the picnic director).





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margelutz

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Reply with quote  #45 

Marge, all money that we collect for the health and rescue funds at the picnic goes directly to Kim Fish (the picnic director).
 
Hi Mitzi :>)
 Thats fine Kim is One honest Gal :>)
Id trust Her with My Life :>) 

 

She truly works Her arss off for that Picnic .
Matter of fact She is  asking for donations now :>)
 
Or art work or whatever :>)
 
So if  anyone has anything that can help .
PLease send it to Her:>)

 
MArge


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Reply with quote  #46 
>>>when so many Mastiff owners refuse to test their dogs and submit blood samples and requested information on the Cystinuria positive dogs
 
>>>Anna May I agree with you on this ,they should truly be ashamed of themselves as Breeders .
 
>>>They make the Money off the Breed ! Most if any dont give a Gurantee for Cystinuria ??
 
 >>>Marge  

Marge, I have a C+ offspring that the owner refused to submit blood on, I've repeativly asked her to give blood, she refuses. 
Why do you think it's the breeders that should be ashamed of themselves and have not donated the blood of positive dogs?
All the money in the world won't give us an answer without the blood of positive dogs!  Maybe you can talk with her and get her to give, heck their doing the clinic at the picnic and she can bring the blood to be shipped with all the urine the they collect.  I have the form and I am sure she does too as I have given it to all my pup owners.
Jan
 
 



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Teresa

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Reply with quote  #47 

Excellent point Jan!!


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annagmay

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Reply with quote  #48 
UPenn has only been able to run SNP Chips and do Genome Mapping on Cystinuria Positive Mastiffs that they've received blood on and Dr. Henthorn would like to run more SNP Chips,   So PLEASE send blood on all C+ Mastiffs!  That is the only way we'll be able to find the gene(s) and develop a DNA test for Cystinuria in Mastiffs.
 
Anna
 
 

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Reply with quote  #49 

DON'T BUY OR USE ANY DOG THAT IS FROM UNTESTED STOCK!!!


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For the betterment of the breed

"Above all, a uniform type should be aimed at by breeders and uniformity of type can only exist in a proportionate ratio in the purity and distinctiveness in any breed"!.........M. Moore
"If breeds did not adhere to a specific shape, form, and colour range, or if breeders disregarded this blueprint, the breed would degenerate to the point that it would hardly resemble the breed at all. Selective breeding does not just create breeds- it preserves them as well." Breeding purebred dogs inherently means accepting limitations on your freedom to just breed anything...Catherine McMillan
" A reinforced consolidation of the American and British standards could be the basis for restoring our breed to the gladiatorial glory of its ancient past, in capability if not in usage".....Norman Howard Carp-Gordon
"I can live with doubt, or not knowing, rather than to have answers that might be wrong"...Richard Feynman
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annagmay

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Reply with quote  #50 
UPenn needs blood, urine, and information about the dogs in order to figure out this complex disease.  Since we started collecting information 10 years ago we're still seeing the same trend that approximately 10% of the boys are testing positive on the NP urine screening test.  These stats are pretty consistent with the X Linked theory.

The main complex issue is why do some C+ Mastiffs form stones and others don't and why do some test high positive and others have a lower reading and some are borderline....  Why do some C+ Mastiffs consistently test positive and others have fluctuating levels of the amino acids in their urine...  Why do some C+ Mastiffs respond to a change in diet and others do not?  Why do some C+ Mastiffs go on to test normal after being neutered and others do not? It is very complex as there are not a lot of common denominators!

We desperately need blood and information from ALL C+ dogs, especially from C+ Mastiffs!!!  When the first run of SNP CHIPS was ran, the researchers realized how complex it is.  It is very possible that there is more than one gene and depending on which gene or genes our C+ Mastiffs have and what environmental factors are involved it might help us understand why there are so many variables with the clinical signs and expression of the disease in Mastiffs. 

By having Dr. Henthorn run more SNP Chips and by having Mastiffs participate in Dr. Giger's Diet Study, maybe they'll find more answers that will help solve this complicated puzzle.

Please donate blood and information on ALL C+ dogs and encourage others to do the same!

Anna

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