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Crossroads

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Reply with quote  #26 

Quote:

Sorry not insulting or rude....and Jennifer name calling tells me alot



I'm not exactly sure where I called you a name.  I used some descriptive words to describe your abhorrent behavior.  Your approach was way off.  What you wrote was insulting and rude.  It will end up setting back the forward motion of the proposed fund raising and subsequent research.  You would have been much better off saying something like "perhaps a charitable trust should be put in place....folks may feel more comfortable sending money that way".  It's called tact and is often required when dealing in business circles and social situations.  Now the one person who was willing to step up and spearhead this has stepped back....thanks Steph...good going.


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Jennifer Patterson
Crossroads Mastiffs
http://www.crossroadsmastiffs.com

"Only two defining forces have ever offered to die for you, Jesus Christ and the American GI....one died for your soul, the other died for your freedom"
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margelutz

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Reply with quote  #27 

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    Today at 03:25 AM
Reply with quote #25


Sorry not insulting or rude....and Jennifer name calling tells me alot. A Realist when it comes to money and Charities..You need to setup a Charitable Trust Foundation directed for Cystinura. The OEMFT got started this way and they started the Foundation and look where they are now. You need to go to the IRS, talk to an Attorney and do it right, if you are going to do it. That way no one will be at risk. I am sure Steve knows how or can find out how to setup a Foundation.

Contact dee Anderson, she can give you direction...

 
Hi Steph :>)
I speak with Dee ,Dee
On almost a Daily bases :>)
 
She one great Lady ,for sure :>)
 
And does a great job with OEMC as do the rest of the Ladies :>)
 
Bonnie and Helen and shame on me ,i cant remember the others
 
That Is on a Keep going bases ,to Help Puppy Mill Dogs :>)
 
I think with this , we just want enough money to ,kick start it ,straight to Mastiffs .
 
As soon as the Gene is found ,then that will be the end of that .
 
 
I'm sure it will take a long while to get enough Money to do this :>)
 
But lets hope it wont be 11 more years :>)
 
Cause then ,I'm thinking the Mastiff as a healthy breed will be gone
 
So in my old eyes :>)  Steve is willing to help get this going :>) 
 
And is using His own money ,cause he wants to see an end to this also . 
 
And is trying to help the breed , If you don't want to go along , then stay with the Danny Fund :>) 
 
 
But don't Bad mouth some one for trying to help :>) 
 
Marge  


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annagmay

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Reply with quote  #28 
The Mastiff Club of America Charitable Trust is an IRS approved 501(c)3 and they now have a restricted Cystinuria Account that was specifically set up for raising money for Cystinuria Research.  This fund was set up due to the suggests of individuals from this message board and the funds will be used to support future Cystinuria ResearchThere has not been a lot of money collected through this message board into that account as of yet, but every dollar counts and will be used for Cystinuria.  If anyone would like to donate money to this already existing account you can send your tax deductible donations to:
 

MCOA Charitable Health Trust

C/O Anne Heyob "Cystinuria Research"

1345 Murphy Hill Road, Lot 182

Langston, AL 35755

 

Please write “Donation to the Cystinuria Restricted Account” in the notes field of your checks.

 
Cystinuria research grants have made significant progress this past year with the DNA submissions from families of dogs and complete genome mapping through SNP Chip Technology.  We need more blood samples from C+ dogs and blood from actual stone formers would be extremely useful. 
 

Again, if you would like to send a tax deductible donation specifically designated for Cystinuria, 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 "Cystinuria Research"

1345 Murphy Hill Road, Lot 182

Langston, AL 35755

 

Steve, if you want to set something up as a separate account to support Cystinuria Research and help pay for UPenn's overhead expenses... then I applaud you for your efforts, but please continue to encourage those that would like to give to an already successful and existing 501(3)c to send their donations to the MCOA Charitable Trust's restricted Cystinuria Account. 

 

The Mastiff Club of America's Health Committee has been able to support every Cystinuria research project that has been presented to us over the past 10+ years through the generous support of the University of Pennsylvania's Genome Frontier, the Mastiff Community, the Mastiff Club of America, the MCOA Charitable Trust, the AKC Canine Health Foundation, the AKC CHF Mastiff DAF,  the Florida Association of Mastiff Exhibitors, other Breed Clubs and through other individual donations and we need more money to continue to support future Cystinuria research projects.

 

Thank you to everyone that is willing to give money, blood, and urine to help find the genes that cause Cystinuria in Mastiffs and develop a DNA test for this horrible disease.

 

Thank you,

 

Anna

 

======================

 

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Anna May
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Patti

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Reply with quote  #29 

Thanks Anna and Steve !!!


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Patti Wilkinson
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steveoifer

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Reply with quote  #30 
Anna,

Do you know if this "new" restricted account is solely for the genome project, or will funds from this account filter into nutrition and other areas of cystinuria research as well?

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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  #31 
The restricted Cystinuria Account will be used to fund Cystinuria Programs. 

Yes, to both we plan to support all Cystinuria Research if it can help our dogs and help our Breed as long as we have the funding to do it.  We cannot run SNP Chips on Mastiffs without more DNA from affected dogs!

The current Research includes SNP CHIP Genome Mapping and a Diet study. 

So far the SNP Chips have been paid for by the UPenn Genome Frontier and the other portions of the research have been funded through the AKC CHF which we support.  The SNP Chips were not available until last year and the Universities and the Genetic Community were excited to put them to use, so we benefited from their desire to put them to use...  The CHF does not pay for salaries and overhead expenses.  The research will require more money and DNA to continue, that is a FACT and we continue to solicit money & DNA for Cystinuria Research.

The current Diet study has not required any funding as of yet, but if it leads to positive results that may help the researchers develop a better diagnostic test tool to identify positive dogs and carrier bitchs or it can lead to better treatment options for C+ dogs... then by all means the MCOA Health Committee will seek funding to support that research as well through all of the available financial resources that we can.

Our number 1 priority is to develop a DNA test for Cystinuria in Mastiffs.  The next priority is a better diagnostic tool to identify carrier bitchs until a DNA test is available and the 3rd priority is to find better treatment options for stone formers...  If it hurts the dogs or is bad for the Breed then we want to find a cure and/or stop it or fix it....

We will support SNP Chip Gene Mapping and support future technology as it becomes available and as we are asked to support it as long as we can.  Every dollar counts and every piece of DNA counts.

Steve, I sincerely appreciate your help with offering to pay shipping on DNA submissions and for offering to raise money for the research.  I also hope you know that the MCOA Health Committee and Cystinuria Sub-Committee and the University of Pennsylvania Researchers have been diligently working on this and we have supported every Cystinuria research project that has been presented to us with or without the request of funds...  The current researchers are using the most current, state of the art technology available to them and they are collaborating with the best researchers and facilities in the world to do our research at the highest level and at the best prices they can find...  So far the diet study has not required funding, but we do NOT have enough dogs for the study, so we need volunteers.

For Success in Health Research Projects we need....
Money - Financial Support
Resources Blood and Semen (DNA), kidneys and urinary tract from C+ dogs...
Information: Pedigrees, Lab reports...
Participation: Through DNA, Diet Study, etc...
Team Work: Everyone working together for the same goal without over lapping each other and to get the best bang for our buck....

THANK YOU!

Anna

================================



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Anna May
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HarmonyMastiffs

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Reply with quote  #32 
I'd like to know the same question Steve asked. I do trust him with this and would not hesitate to send in a donation from a litter to him.  I know he has this at heart.  I also know how much he works to help our breed, we may not always agree, but he has the breed at the forefront. 

He is very thorough in his research and I am curious why he would want to set up something on his own if something functional is already set up.  Maybe what he is suggesting is not the same sort of money pooling that has been set up by the MCOA? 

Not sure.  It would be nice to know, if there is a difference, what it is so I can make a choice where I'd like to send my contributions.

Thanks.


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Monica Coyle
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annagmay

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Reply with quote  #33 
I believe Steve is on the same page as the MCOA Health Committee and the Cystinuria Sub-Committe.  We have the same goal...  I am excited to see if he is able to collect a lot of money for Cystinuria Research...  I'm sure Steve has sources of money that the MCOA Volunteers do not know of... 

On the other hand, I want everyone to know that there are existing places that are working very well to donate their money and to continue to support Cystinuria Research.  Things are being done and things will continue to get done.  The delay is the complexity of the disease, the available technology that the researchers have to work with and participation from breeders and owners....

We need money!  We need DNA!  We need to work as a team to figure out the puzzle....

Anna

==================

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steveoifer

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Reply with quote  #34 
Monica,

My concern was in my evaluation of the genome project funding, which in the end, will be the best solution to erradicate this disease.

No doubt other studies into different avenues of nutrition and perhaps more accurate testing would benefit as well, but the genome project is where the core problem exists and that was where I felt focused dollars should be targeted.

Taking a practical approach is also important and I know that Anna May is an advocate to all Mastiff fanciers, regardless of their being members, or not, of the MCOA.

I didn't want to "spearhead" an end-run around the parent club, as I felt that this serious issue should in fact be handled by the parent national breed club.

I'm pleased to see that through Anna's input, a "special" account has been established at MCOA just for cystinuria research. I have no problem in throwing my support to this effort by MCOA. I trust that other fanciers will follow suit and give as much as they can in this effort to eliminate the spread of cystinuria in Mastiffs.

Quote:
I'm sure Steve has sources of money that the MCOA Volunteers do not know of... 

Please inform me of these sources as I'm very curious indeed!...LOL


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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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HarmonyMastiffs

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Reply with quote  #35 
Quote:
No doubt other studies into different avenues of nutrition and perhaps more accurate testing would benefit as well, but the genome project is where the core problem exists and that was where I felt focused dollars should be targeted.


So, to be clear, when we donate to MCOA is all the money going to the genome study?  Or only a portion?

Quote:
Our number 1 priority is to develop a DNA test for Cystinuria in Mastiffs.


Anna, is the developing of a DNA test ( forgive my lack of the scientific detail terms/knowledge) the same as the genome project? 
i.e., are the folks at UPENN working on the same thing when we hear DNA and genome?  Therefore, when we send money in we can be assured that the focus is the same and the work being done with the money is the same?

Or

Does Steve see an area that he feels needs to be more closely targeted and not enough funds are being directed to that area?

Also, I have heard that some funds from MCOA were used to cover research of Cystinuria in general - is this true?  and if so, was it necessary to help the research for our breed?

Or

Do all funds coming from our breed only get used at UPENN for our breed?

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Monica Coyle
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annagmay

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Reply with quote  #36 
Jeeze, how do you guys keep up with these message boards?  LOL!

Monica I think I answered most of the questions already, but I'm not sure.  Steve and I are working for the same cause and trying to raise money for the same purpose!  He's probably a lot better at fund raising than we are, especially since he has a lot more money than we do .  Seriously that is an area we could use help in! My message to all:  PLEASE DONATE MONEY FOR HEALTH AND PARTICIPATE IN RESEARCH PROJECTS!!

Steve is very focused on the SNP Chip Technology which is the newest state of the art technology used for genome mapping and which has currently been used for trying to locate the genes that cause Cystinuria in Mastiffs.  Hopefully this will lead to a DNA test for Cystinuria in Mastiffs!  Finding the genes and developing a test for Cystinuria in Mastiffs is also the main priority of the Health Committee, the Cystinuria Sub-Committee and MCOA Charitable Trust. 

There are other older yet affective ways for finding genes and doing the gene mapping and those methods will also continue to be used along with the SNP Chips.  I believe we will continue to use the newest and latest technology as it becomes available and we will continue to use the technology that has worked in the past as long as it continues to be effective... 

SNP Chips have been used for several years in human gene mapping research and a couple of years ago the technology was also successful in the completion of a complete gene map of a Boxer dog.  I think almost all of the researchers we work with helped and played a part in that research and helped write the book and many articles about it...  Unfortunately the company that offers the SNP Chips commercially did not have it readily available until last year (supply did not keep up with demand).  Due to the hype and hoopla and overall excitement the various Universities and Labs and Genetic Community were extremely excited about putting the SNP Chips to use and Canine Cystinuria Research was one of the first research projects that were looked at with the new technology. 

The way I understand it, the SNP Chips are purchased in lots of 100 so it is practical and more economical to go a head and run 100 at a time.  Since UPenn did not have DNA on 100 Mastiffs that have formed cystine stones &/or that tested high positive on the NP urine screening test along with elevated COLA on the Quantitative Amino Acid test, UPenn also ran tests on other Breeds that have a similar form of Cystinuria according to the expression of the disease (males only and late onset...).  They may have even ran SNPs from other Breeds that have different health issues but their goal was to run as many SNPs on as many dogs as they could without wasting any of the SNPS, to avoid having to keep waiting for more samples to trickle in, and to get more for their money (they paid for it)...

Another reason for running samples on other breeds and comparing that information with the information collected from Mastiffs is it helps the researchers to find the common genes when looking at unrelated dogs that have the same disease and phenotype or expression of the disease...  An excellent example would be the research behind Collie Eye Anomaly (CEA).  Here is an article by Dr. Heidi Parker of NIH on "Understanding How Breed Relationship Facilitates Genetic Studies of Complex Traits and Diseases" (pages 10, 11 & 12 of the 2007 AKC CHF Parent Club Health Conference White Papers) that describes the benefits of looking at other breeds to find genes:
http://www.akcchf.org/pdfs/whitepapers/CHFSummaryReport2007.pdf

UPenn currently wants to run more SNP Chips on Mastiffs with Cystinuria, but they need more DNA from more dogs to run the tests...  They would especially like to run samples from cystine stone formers.  Last week UPenn received a couple samples from cystine stone formers and there is someone from England that is submitting a sample from a stone former there.  We also have another breeder that is willing to submit blood and urine from a family of dogs that have a relative that tested positive on the NP urine screening which might lead to more C+ dogs..., so we're slowly adding more dogs to the study.  With Steve's generous offer to help pay for shipping expenses to those that need assistance, I'm expecting we'll see even more samples come in.

Anyway, if UPenn decides to run the SNPS and we only have DNA from 25 more C+ Mastiffs yet they have DNA from 25 C+ Scottish Deer Hounds and 25 Irish Terriers and 25 Basset Hounds....  then they're not going to sit around and wait for 75 more C+ Mastiffs to send in blood, they're going to use the available resources that they have to run the samples and hopefully they'll be able to develop a DNA test that will benefit all of the breeds that participated in the research and donated money to the research...

Please read the article I mentioned earlier in this post a few times if you still don't fully understand the need to look at more than one breed and hopefully we can all look in our hearts to see the benefits of helping more than one breed when we're researching health issues.  Mastiffs are not losing anything by having other breeds participate in research along with us, we are gaining from it.

As I've said before we need DNA and money $$$$$ to continue with the health research projects and to do the gene mapping...

Anna

===================

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Anna May
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Comstock

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Reply with quote  #37 
Hi Anna,

Is there anyway we can get an updated version of how many Mastiffs tested thru 2008, number positive, how many had been tested previously and were negative and at what age are we seeing this change.  All that information is available to UPenn and would be helpful to breeders who need to make decisions now, not in the future.  Surely there must be some database with that information in it that would not be difficult to sort by Cystinuria status, age of testing and in the case of those false negatives, age when those results changed.

I think part of the frustration people are feeling is the lack of feedback from UPenn as to status these past 12 years since testing began.  We see other breeds (Newfs) that have found a DNA marker while we are still dealing with a NP test that is less than 100% accurate at telling us which dogs are actually negative for Cystinuria.  Information about retesting, diet and supplements seems to be dribbling out.

When I spoke with you last fall I was told there was plenty of money, just not enough blood from affected dogs or relatives of affected dogs.  Now we are talking about donations and it appears that past donations when into a common pot for studying Cystinuria.  I'm not sure if that was for dogs alone or dogs and people.  I don't have as much a problem with that as I do with not having at least yearly status reports, and I actually think quarterly would be better, coming from UPenn in a published format, not by word of mouth as seems to be the case. 

I don't know of any project, research or otherwise, that goes on indefinitely without some periodic report by those in charge of the project.  I'm sure the researchers are all wonderful, intelligent people and the Mastiff form of Cystinuria is more complex that say Newfs, but IMO those of us supporting the research with money and blood deserve more information than we are getting and updates more than once each decade.  It is nice that UPenn is talking to you and Steve, but IMO they need to be getting information out to the whole Mastiff community in the form of a written report.  Then there is no chance of miscommunication as to what is being done and what needs to be done.

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Caroline Tobin
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steveoifer

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Reply with quote  #38 
Caroline,

From what I gather, the stats are so thin that it doesn't form any basis of helping anyone better understand any commonality, or distribution numbers.

If 10% of all males tested positive for cyst and females don't test positive with current testing methods, then stats will not change using current techniques.

The aging Mastiff appears to increase stats adding to positives, but there is no conclusive reasoning for this anomaly.

If there was a better method in testing, or treating known affectives, then stats would be more meaningful in determining if the battle is being won.

Stats are premature at this point, because testing is not effective in many instances. If periodic stats are released, they will be nothing but PR.. BS.

If on the other hand, we develop an accurate test for both males & females, then stats would be in order and should be disclosed more often to enable everyone to detect progress in this issue.

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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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HarmonyMastiffs

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Reply with quote  #39 
Really good post Caroline.

Anna - your posts and the information they hold are so appreciated!  Frankly, this thread and two others are the only ones I've checked on today.  As a new breeder, I am very concerned about C+ and try to stay on top of the current information as much as I can - its complicated when you all start talking about the scientific pieces but I think that most of it is sinking in.

The sharing of information is truly very much appreciated and the time you take to type it all the same!

Thanks.


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Monica Coyle
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Comstock

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Reply with quote  #40 
Hi Steve,

I don't see a cure until we have a DNA test and that may be years in the future given our progress in the last 12 years.  What breeders and stud dog owners want to know is when is a negative finally a negative.  How many dogs that were negative turned positive?  At what age were they negative and then positive?  If 700 males have been tested (I'm guessing that is close) and 10% are positive, of those 10% or 70 males, how many had tested negative previously?  Using the same 10% as a guess, at what age were those 7 negative and then positive?  Granted a small sample, but better than anecdotal information dribbling out one story at a time.  The only people that are seeing the whole cystinuria picture in Mastiffs as we know it now is UPenn.  I think it would be nice if they shared.  I'm not asking for a cure tomorrow, but I am asking for hard facts and information that they readily have to be shared with the Mastiff community.  I think that would better serve the breed and getting people behind solving the problem, be it with donations of money or blood.



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Caroline Tobin
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Reply with quote  #41 
Quote:
From what I gather, the stats are so thin that it doesn't form any basis of helping anyone better understand any commonality, or distribution numbers.


That does not mean that an update of the current number is not needed and wanted. I find it disturbing that this hasn't been updated or freely given. It's not like we're asking for the names and pedigrees that should come from the owners and breeders.

I'd really like to know also how many of the current positives tested negative previously, had this information been shared maybe yearly testing might be seen as more important.

So thin or not...I want numbers, stats, reports and regular updates. I'm participating in every way I can and I expect answers to be available to me and everyone else.

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Lora & Angus

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margelutz

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Reply with quote  #42 
That does not mean that an update of the current number is not needed and wanted. I find it disturbing that this hasn't been updated or freely given. It's not like we're asking for the names and pedigrees that should come from the owners and breeders.

I'd really like to know also how many of the current positives tested negative previously, had this information been shared maybe yearly testing might be seen as more important.

So thin or not...I want numbers, stats, reports and regular updates. I'm participating in every way I can and I expect answers to be available to me and everyone else.

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Lora & Angus

 
CLAP ! CLAP!I'm standing giving, you and Caroline a standing ovation :>)
 
I think that's what we all want ,members or not .
 
Seems Steve has, brought this ,to the for front ,for us all .
 
And Information  is  starting to trickle down .
 
As it should have been , a while ago :>)
 
I'm happy to see its all coming together finally .
Marge

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Reply with quote  #43 
Quote:
So thin or not...I want numbers, stats, reports and regular updates. I'm participating in every way I can and I expect answers to be available to me and everyone else.


Lora,

Today is Monday, tomorrow is Tuesday and I think you can estimate the balance of the week until next Monday. If you want daily updates I can provide you with that and keep you in the loop. I have inside information!...LOL

Seriously, the researches are basically telling us that there is no stat that has any merit. So what's the point in just throwing out erroneous numbers?

Keeping informed does not mean being updated with nonsense numbers, just so that others can feel in the loop, or on top of things!

If there are stats that make sense, then by all means they should be made known, but when dogs are randomly getting C+ scores at various ages, all that the researchers can say and have said, is that they get these scores at random ages, with the aging Mastiff showing a slight increase in frequency. Little if any scientific correlated intersects and even less to report to the masses. Some dogs tested earlier may have been negative and some down the road turn positive, but the frequency will not be very telling, or meaningful other than just stating the obvious.

I want scientists, not public relation people conducting this research and quite frankly, I personally could care less about demands for false information by those who demand information when there may in fact be none!

The research money is needed to conduct experiments that can lead to and reveal correlated facts, that would then lead to hard stats and hopefully a DNA resolve!

The best way that we can help now is with money and set aside our need for control, with information outlets that will provide us nothing of substance until the work is progressing.

Once the ball gets rolling I would insist upon a flow and progress report on all data of relevance, but until then, I think we all basically have seen the numbers and they are not very telling!

I truly understand your concerns, but want us to keep a level outlook as well.

__________________
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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Reply with quote  #44 
I realize you're being funny but really why is it so hard to say we've tested this many and the results are thus? I mean, I make reports charts and graphs all the time and any data is better than old data. I'm not asking for this info from you specifically. It's just a pet peeve and I'll be bringing it up with the researcher I've been in contact with when she's back from Vacation and responds to my email (I think she's back today). I'm not looking to pinpoint anything but I do think that the community should be given updated numbers. Are they worried that if the number are low people won't take it seriously? Well, what some might consider low anyway. I'm thinking any positives are a blight against the breed. The post from BoomerMom is heartbreaking and I hope that I never have to go through it. If so, we will do the surgery....but I'll cross that bridge.

I'm willing to participate in any fundraisers, will donate any of my own work, and my husbands to raise money.

FYI Angus was neutered friday. He gave me a bit of a scare on Saturday with his pacing and panting, but he's just his normal goofy self now. He has sent in blood and more urine and we're waiting to find out if they need more.

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Lora & Angus

http://www.silverknightmastiffs.com
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Reply with quote  #45 
I thought some of this was dealt with through the MCOA and the AKC
http://mastiff.org/health/health_index.htm

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Mabel Wimmer
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Comstock

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Reply with quote  #46 
Mabel,

Look at the dates on that page...the most current information is OVER 2 years old. 

Steve, you act as though we just heard of Cystinuria and studying it began last week.  I have been sending in urine to UPenn since 1997--12 years by my estimate is way too long to be waiting for simple information to be forthcoming.  Though it is nice of you to get involved, I don't want my information spoon fed through someone else.  I want to know what UPenn is doing with our money and where they are in this study AFTER 12 years.  And, I want it from them, not thru the grapevine.

Lora, thank you for jumping in.  After reading Rosemary's post, you know how bad the future could get.  I'm hoping you and Angus will not face the same problems and I sure don't blame you for expecting more answers than we are being given.

I think many of us in the Mastiff community know at least one or two other owners that have Cystinuria positive males.  Some are not stone formers, but others are and their owners suffer right along with them.  Heck, we don't even know what percentage of Cystinuria positive males are stone formers.  Why should that be a secret?

Steve, you are asking the Mastiff community to donate money.  Along statistical lines, just how much money has been donated to various funds (Danny, CHF, Health Committee, etc) for Cystinuria in the past 12 years?  How much of that money has been used for studying Cystinuria in Mastiffs?  I know there has been some private grant funding...do those grants get feedback?



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Caroline Tobin
Comstock Mastiffs
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Reply with quote  #47 
Caroline, I could answer you, but it would only be "grapevine responses"!

Look, ....what went into re$earch in the past is not going to determine future progress through NEW scientific methods.

What went on in the past has brought us to the present state of affairs.

The genome project is probably the only solution to this problem, that's why I support it and got on board. This research area is NEW and although cystinuria is not a "new" disease, it's exciting to be able to use these new research techniques in attempting to find a resolve!

We can throw about what was and why it was, or we can take a new approach and get on a better track.

We either do, or we stall as usual!

The money that needs to be raised now is no reflection on past research dollars that were used in order to get us to this point.

Jerry's kids have gone through a billion dollars and they still have donations coming in!

The genome project has the best chance of finding a reason for cystinuria and a way of detecting it in breeding pairs.

Let's not quibble about petty politics, or making demands about getting old lame stats in advance of giving.

You could contact UPenn accounting and ask them how the money was distributed over the last 12 years. Giger & Henthorn are not Ernst & Young!



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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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Crossroads

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Reply with quote  #48 
Caroline and Lora,

I asked very similiar questions on a recent Cystinuria thread.  Annagmay responded with the numbers below.  At the time I was also bombarded by private messages and emails saying I was trying to ruin all forward progress in this renewed effort by being negative and trying to drag everybody down...so good luck.  You can visit the old thread here.  http://mastiffmessageboard.websitetoolbox.com/post?id=3539800&highlight=cystinuria

06/25/09 at 03:05 AM
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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Anna May
http://www.TripleTMastiffs.com


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Jennifer Patterson
Crossroads Mastiffs
http://www.crossroadsmastiffs.com

"Only two defining forces have ever offered to die for you, Jesus Christ and the American GI....one died for your soul, the other died for your freedom"
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Reply with quote  #49 
Hi Jennifer,

Thanks for the link and the updated information. 

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Caroline Tobin
Comstock Mastiffs
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margelutz

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Reply with quote  #50 
asked very similiar questions on a recent Cystinuria thread.  Annagmay responded with the numbers below.  At the time I was also bombarded by private messages and emails saying I was trying to ruin all forward progress in this renewed effort by being negative and trying to drag everybody down...so good luck.  You can visit the old thread here.  http://mastiffmessageboard.websitetoolbox.com/post?id=3539800&highlight=cystinuria

Hey Jen i got the same E mails :>)
That's  why I'm happy to see ,others here asking the same questions :>)

Now the info is comming out ,so i guess we are in good company :>)
and not such downers .

I was told on Sunday at lunch, that the ,New web site is on its way .

marge


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