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Micona

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Reply with quote  #51 

After reading many of the posts, I realized that why do mastiff owners have to come to a board to find out important information about health issues in our breed.  I probably have learned more on the board than I ever have going to the MCOA website because it hasn't been changed for how many years.  Although thank gosh for this board, but as I sit here trying to decide whether or not to renew my membership, I wonder why isn't this information being updated on the MCOA website?  If we can't go to one centralized point where there is the most up-to-date information, then why be a member.  There are many mastiff owners that do not know about these boards and go to the club's website for information.  Anyone know?

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WindfallMastiffs

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Reply with quote  #52 
What i meant was , Breeders that are not testing their Dogs or Studs ??
>>It's been that way all along with every disease this breed has.  It's also been that owners have done tests on their dogs and not made them public as they felt it was up to the breeders if they wanted to let the public know.  And do they?  No!  A problem that needs to be changed!  We all need to work together, not fight, not try to hide things we had no control of, but lets work together and make a difference!
 
I mean 1500 hundred Mastiffs ,after all the advise on the Boards is truly Shame full .And were these  new 1500
Tested ? Or was the Count from 03 added to that ???
>>Many feel it's not an absolute answer and that an answer that isn't what they want can change their whole plan to have that show dog or breed that bitch! That scares many, that is why getting on these boards and crucifying people makes others more afraid to get their results or share their answers.
 
With so many more coming up positive ,everyone should be running to their Vets ,or collecting themselves .
>>I Agree!
 
Now I know what your talking about   ,But I think the thinking was !! His other Sib's were tested ,those that were Positive .
Gave Blood ??? So wouldn't they all have the same DNA ???? 
 Same breeding ????
>>Do you have the DNA as your mother, brother, sister?  If it were exact you wouldn't be you!  So, yes siblings have some of the same genes, but not all, so finding a gene of a disease isn't an easy task, so the more C+ dogs to work with, the more genes they can look at to find the one linked to C+.
 

 
I'm sure she has whatever she needs to do the testing :>)
And if need  be , hell She  can do it Herself :>) 
>>Yes that is true!
 
Let also hope that ,  all Pups will be tested from all the off springs ?? even those that were bred !
>>I agree, lets hope!  I have e-mailed and snail mailed ALL my pup owners and if I have access to their offspring, I have notified them as well and gave them the form to submit their samples.  But as with everything, many don't feel this is important and don't feel there is a need for them to donate.
 
 Since all were sold on Full Registration :>)

>>Not all of my guys have been sold on Full Reg. and most that were have already been spayed/neutered.
I think all off springs should be followed ???

>>I agree, but good luck with that, I don't know many who keep in touch with the pup owners like I do, nor do I know any who ask their pup owners to participate in all the health testing I do.  And I thank all my pup owners for doing what they do!
I now right now with the economy, there are many who aren't so willing to do all the health testing I have asked of them, This I can understand!

I feel that would also be a big help in finding the DNA , Yes ??? :>)
>>Yes, I agree

 Plus if we are refering to the same person ?? She has never made dime off of a Breeding ??

>>I paid for stud service!
But She sure as hell is paying a good Buck for  the special food ,and testing Urien a lot .  To keep His Ph right ?? Cause she is afraid he will form stones ,and she will loose Him ???

>>This is the sad part about not having a DNA, this is what we will all be doing till that day comes!
 
So if one Vile of Blood is an issue ?? It truly should not be :>) And i mean this in the nicest way :>)

Some time this is the problem ,The science People ,look at the science part of it .
But the everyday Owner ,is worried sick ,of loosing thier Mastiff
Specialy ,when they cant afford to apay , 500 a month to keep them going
>>Tho I may be a breeder, I too am the every day owner who is worried sick!  I not only worry about my own dogs, I worry about all the pups we have produced. 
 
Jan

 

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WindfallMastiffs

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Reply with quote  #53 
After reading many of the posts, I realized that why do mastiff owners have to come to a board to find out important information about health issues in our breed. 

>>This is one of 2 boards I have only recently joined, but I know of the health issues in the breed because I chose to do my homework.  This is what I tell every person who calls to learn about this breed.  But many don't think that necessary and just think they can buy a dog!
You know how I try to educate people and tell them to do their homework.  This is so important!

 I probably have learned more on the board than I ever have going to the MCOA website because it hasn't been changed for how many years. 

>>You are correct, but remember this is a volunteer job and it takes time and then all on the boards have to confer.  I know a few years ago I reviewed all the health pages and updated what needed to be changed, then gave it to the board to review and it got lost int he shuffle as well as our web host was resigning and things weren't getting updated as needed.


 Although thank gosh for this board, but as I sit here trying to decide whether or not to renew my membership, I wonder why isn't this information being updated on the MCOA website? 

>>Just know, you can't make change if you are not a member and a voice to make change!  This is why it is so important for member to attend the meeting at the specialty and keep on top of what is happening and voice their vote!

If we can't go to one centralized point where there is the most up-to-date information, then why be a member. 

>>There are always positions available for people to join and help in areas of need!


 There are many mastiff owners that do not know about these boards and go to the club's website for information.  Anyone know?
>>that is why it is so important to educate as an owner or breed.

Jan

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Teresa

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Reply with quote  #54 
Jan summed it all up pretty well, but I can tell you from my conversations with various people, the website IS being worked on. It's just a long process since they are having to start from scratch (new webmaster) and that takes time. Since the volunteer has a life too, she is graciously doing it as she can. Unless any of you want to jump forward and pay tons of money for a full time webmaster, I'd suggest just asking questions and learning. It will get done, but sometimes we have to be patient. I know that is NOT my strong suit, but I'm trying to understand the constraints.

Yes Marge, if all the pups had the exact same DNA, they would all look 100% the same, so no, they do not have the exact same DNA. The blood is important even in the non-affected girls and boys from close relatives. I do not know who you are referring to so this is not a personal attack, but I can say that if she's so interested in helping to find a DNA marker, there's really NO reason NOT to send in the blood and she should be embarrassed by her inaction. As you know, I have one of Jan's girls (well, she lives with my best friend, but she's still mine) so I know FIRST hand that Jan has been awesome to keep me completely informed and had no problem when my choice was to spay Foxy. She made all of the forms and instructions extremely easy for me to get so I would know what action I needed to do...

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annagmay

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Reply with quote  #55 
There are a few reasons that information on Cystinuria is being discussed more on the Message Boards than on the MCOA website. 
  • Problems with the MCOA Website (stuff happens)
  • More and more people are seeking information on Mastiffs from the Message Boards
  • Every once in while someone brings the Cystinuria discussions to the attention of someone on the MCOA Health Committee &/or Cystinuria Sub-Committee and we try to share current information...
The good news is that we just recently had another person volunteer to take over as the MCOA Webmaster and she is completely redoing the MCOA website again and hopefully it will be more user friendly and less complicated.  The project is almost finished and the updated website will have a new look and will have a lot of new information in a variety of areas.

Unfortunately there is not a whole lot of new information on Cystinuria in Mastiffs other than the information that's already been shared here.  We'll be adding information from the Health Committee Annual Reports, the Cystinuria Diet Study, and update old information and add the new information...

Not meaning to go off topic, but since it was brought up here I may as well comment on it....

I'm not sure how this has anything to do with being an MCOA Member or not, but I do encourage people that love Mastiffs and that are actively involved in the Breed to become members of the MCOA if they have a passion for the Breed.  My philosophy is that it is not what the MCOA can do for us, but what we can do for the Betterment of the Mastiff Breed through our Parent Club.  The MCOA needs passionate, caring people that can volunteer their time and service to try to help the organization achieve its mission and goals.  The best way to make things change for the better is to get involved and help!  Another way is to vote!

Some of the things coming up that might inspire others to renew their current membership is that we are about to vote on the upcoming Specialty Judges, we are looking at making revisions to the COE and the COE Revision Committee will need input from the MCOA Members and the members will have to vote on the changes, there are special classes at the National and special awards that require MCOA membership, etc….  Also, the MCOA is the only one that can make changes to the AKC Standard on Mastiffs and that can only be done if the membership votes to approve the changes.

 

Anna

 



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Teresa

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Reply with quote  #56 

Well Marge, if you are not happy with the way the website is being handled, would you like to volunteer to do it?


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Teresa

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Reply with quote  #57 

Then why hasn't she sent in the blood for the research? For that matter, why hasn't the breeder/buyer sent in the blood? This isn't about Jan or her puppy buyers. It's about EVERYONE who has a dog/bitch related to a C+ boy sending in blood samples for the research! Apparently, that's as important as the fund to support the research. Now, do you get it?


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Teresa

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Reply with quote  #58 
Also, Marge, you didn't answer my other question about volunteering to do the website...You could always employ spell check while doing it.

AND, I don't think people are dropping out or not becoming members for all the same reasons. I'm not a member either, but it has NOTHING to do with the website. To be honest, I'm afraid of the politics!! I guess that's a phobia I'll conquer someday...

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Teresa

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Reply with quote  #59 
Quote:
I'M not sure about others ,but if i had someone doing a poor job on a Project .
They wouldn't be there long ,Pay or no pay :>) I'm sure there is enough Back up in Volunteers ???????????

If not then get the check book out :>)
Some times the best things are not free :>) Plus I'm not the only one :>)

Seems a lot of good upstanding breeders are dropping out ???? 


Oh, I guess you just ran your thoughts together. I just thought that since you were ranting about the website, that's what you meant by the last sentence...

Quote:
Well Teresa :>)  Isnt Politics also part of the Club ?
Always has and always will be :>) 
 


Yes, it is and I'm certainly NOT saying it's a good reason for not joining. It's actually a bad reason for not joining. Like I said, it's a personal phobia I'm trying to overcome!

Quote:
Or just use the Boards There are free :>)  


NO, these boards are NOT free!!! The more readership and posts, the more it cost the board owner. I sincerely appreciate Jann for allowing us this forum, but be clear about this, IT IS NOT FREE!!! It may be free to you personally (again thanks to Jann), but it not free...

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WindfallMastiffs

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Reply with quote  #60 
And here ya go again :>) The Person that didn't Give blood  is a   Windfall Buyer ??
>>Marge, you really are something else, you are the one the loves to push the buttons and stir the pot don't you.
How do you know the "OTHER WINDFALL" bitch didn't give blood?  Have you called and asked him? 
 
And isn't it up to Jan to tell or ask them ???
>>ALL my pup buyers have been notified and I have requested ALL to give blood and urine, so what is your point here?

Hell you thought the other, Person was a Terrible Person because Jan said so :>)
>>I have NEVER said the "OTHER PERSON" was terrible, you are putting words in my mouth!  I was just making a point that this is not just the breeders who are not testing or giving of their dog, but people who actually have C+ dogs.  You would think they more than anyone would like to do all they could to help find the DNA for this horrible disease. 

And so is the Breeder of the Bitch that ,hasn't given Blood and had a litter of Pups !!! That went with Full Reregistration ???
>>ALL my pups I have had were all placed BEFORE we found out that we had produced C+ dogs.  We have not had a liter since.  So was I suppose to have a premonition that we had this disease and sell all on limited or give them away free?

Do we see That Person up here ?? NOOOOOOOOOOOOOOOO
>>No because he is smart enough to not waste his time reading half the crap on these boards.  Last I talked to him, he was working on his yard, fixing his pool and working to support his family. 

So if one Person or Buyer was brought to the Chopping Block ,then Hell bring them all here :>) Don't hang one and not the other :>)
>>So what have these people done to you to want to bring them to the "CHOPPING BLOCK"?  You really are not  nice person are you?  You don't even know what they have done to help with the research, yet you want to crucify them unjustly!

Teresa don't be so fast to jump in here :>)  I told you this before ,i even think you had a few private E mails ????????

This thread has gotten way off track .
>>Gee Marge, go figure!
 
Jan


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annagmay

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Reply with quote  #61 
Here's a video song that explains the difference between Cystinuria and Homocystinuria.  I thought I'd through it in to help break the mood and let everyone hear how college kids can have fun while they learn about this stuff. 

Please remember that the the researchers at UPenn are studying DNA on Mastiffs that have been confirmed positive of Cystinuria through quantitative amino acid testing or by stone formation.

USMLE Study Songs - Homocystinuria


Anna


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annagmay

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Reply with quote  #62 

This video power point presentation on Human Cystinuria has been posted on the Message Board before, but I think it might be good to repost it for those that think it isn't important to submit blood samples on a Cystinuria Positive Mastiff if it's brother is already participating in the research.

We need to figure out what gene(s) are causing Cystinuria in Mastiffs and we need to understand how these genes affect the expression of the disease...  Most likely Cystinuria in Mastiffs is caused by more than one gene, but we won't know unless we can continue studying more Cystinuria Positive Mastiffs' DNA....

These genes are not the same genes that causes Cystinuria in Mastiffs, but the human inheritance of the disease might help others understand things a little more....  This might help us understand why most C+ Mastiffs never form stones while others do...

The Genetics and Inheritance of Cystinuria
http://www.cystinuria.org/resources/education/genetics/

Anna


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Teresa

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Reply with quote  #63 

Quote:
Teresa !!!!!!!!!!!  If i was ranting ,you would know i was ranting I dont rant :>) 
 


Well, if you aren't ranting, you surely could have fooled me!! Sounds like "raging rant" to me...BTW, Jan never told me who didn't submit blood.

Quote:
No Jan you go figure !!!Iam not the Bad guy here .
So lets quit while your ahead .

Better for you better for me :>) 
 
 

LOL...please Marge, don't try to do a battle of wits with Jan. You're unarmed. You are not the bad guy here, just the irrational one with enough negativity to pull the moon out of its orbit.

Bottom line. If ANYONE has C+ boys, please send in vials of blood to UPENN on him and as many close relatives as you can. Granted you can't force people to comply, but if more people want to do the right thing by the breed, maybe UPENN will get enough blood samples to make huge progress...THAT is what the thread is about.
http://www.cystinuria.org/resources/education/genetics/

 


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mariaruoto

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Reply with quote  #64 
I haven't really had time to sit down and reply to everything on the boards lately...but I've been following everything...and I'll tell you...I'm disappointed at where this thread is going...

THIS IS AN INCREDIBLY IMPORTANT SUBJECT. It's important to breeders, owners and, most importantly, the DOGS!

Can everyone take their personal crap elsewhere (start your own thread if you need to or deal with it privately) and focus on the subject...statistics, questions, suggestions (ideas on how to get donations, ideas on how to get people to send in blood samples, etc) and valuable input (new research, updates, informational links, etc)...

Constant pointing of fingers and bickering doesn't help - all that is going to happen here is that people are going to STOP reading this thread and miss vital information...


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annagmay

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Reply with quote  #65 
"Contributions needed for cystinuria research"
 
REMINDER!
 
Financial contributions for continued Cystinuria research and contributions of blood from ALL C+ Mastiffs and their close relatives (for DNA analysis) and contributions of information (stone analysis results if applicable, information on diet, supplements, and spay/neuter status, etc...) are extremely important to continue our Cystinuria Research.
 
If you know anyone with a Mastiff that has ever tested positive for Cystinuria or that has ever formed cystine crystals or stones PLEASE encourage them to donate a blood sample and share the information with UPenn.  The donations of blood from C+ Mastiffs is CRITICAL to the research!
 
Test & Retest and Test & Retest for Cystinuria and participate in the research study!
 
Thank you to all of you that are helping solve the puzzle!

Anna



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Teresa

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Reply with quote  #66 
Thank you Anna. And, Maria, you are absolutely right. This is important so I will make it a point to stop worrying with the negativity and arguing when I know it's really going no where. Let's stick to the point.

 This is a disease we need to get a handle on. Please test all our boys and then if, God forbid, they test positive, please help UPENN by submitting blood sample of both your boy and any/all close relatives you possibly can. I do want to thank Anna May for continuing to keep us GREATLY informed. Also, I'd like to thank Jan for her communication in teaching me a great deal about this disease and  Steve O for taking the time and effort to get involved as well. Let's not forget a huge thanks to Jann Lanz who allows us the opportunity to learn on her dime!! Cooperation and communication is the key towards progress.

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annagmay

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Reply with quote  #67 
Informational article on Cystinuria in Humans for those that might be interested...

http://www.cystinuria.org/resources/library/05_09_23-Cystinuria/


Anna

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mariaruoto

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Reply with quote  #68 
What would have to happen to make Cystinuria testing mandatory in order to get a CHIC award?

Also note the change as of Nov. 09...if you multi hip test - you will need all results to be public to get the CHIC.

http://www.caninehealthinfo.org/brdreqs.html?breed=MF

Hip Dysplasia - As of Nov 09, if evaluations are on file for the same test from multiple organizations, ALL the results must be disclosed and placed in the open database in order to receive a CHIC number.
OFA evaluation
OVC evaluation
GDC evaluation


Elbow Dysplasia
OFA evaluation
GDC evaluation
OVC evaluation


Eye Clearance
CERF evaluation - Minimum age 24 months


Congenital Cardiac Database
OFA evaluation


Autoimmune thyroiditis [U](Optional)[/B]
OFA evaluation from an approved laboratory


Cystinuria [U](Optional)[/B]
Urine Test PennGen -recommend minimum testing age of 18 months

And ALSO for it to become a requirement for the Bronze and Silver level Health awards from MCOA?

Bronze Level
Passing OFA, OVC, or GDC hips, OFA, OVC, or GDC elbows, and CERF certified.

Silver Level
Passing OFA, OVC, or GDC hips, OFA, OVC, or GDC elbows, CERF certified, OFA heart and passing MSU or other lab's equivalent full thyroid panel and/or OFA Thyroid Certification.

Gold Level
Passing OFA, OVC, or GDC hips, OFA, OVC, or GDC elbows, OFA heart, OFA patella, CERF certified, passing MSU or other lab's equivalent full thyroid panel and/or OFA Thyroid Certification, vWD normal, UPenn cystinuria normal.

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SherryR

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Reply with quote  #69 
This certainly sidetracked didn't it...but often when a nerve is touched sparks fly. 

Lets all be honest..we all know breeders who "justified" a breeding because they were breeding away from something.  A bad elbow, prelim very fair hips and didn't have the courage to have the permanents for fear they would fail or even IBD.  Why is the cysternia any different?  There are those breeders who will spay/neuter that awesome mastiff because they didn't pass a health test but how many will pass it off and say "if bred" right it will work out.  How many will test yearly and wait to use that stud dog just in case?

The days of keeping our head in the sand are long gone as well the days of needing to use a mastiff that has a health defect no matter how nice and close to type they are.  Look at the registration numbers and tell me that with the current practises anyone can afford to have that same "old school" attitude on health...you can't because there are simply to many mastiffs for anyone to say that a breeding just has to happen for the betterment of the breed.

With Cysternia most of us didn't know 5 years ago that testing was critical every year and alot of dogs were bred with all of our ignorance.  Now that we are getting the word out we will have no excuse.

We need to get a a place where we care more about what we can do for this breed that what people think of us.  Yes, that means openly sharing, not slinging trash but helping each other.

Heh...I'll start...I am the breeder of Angus a recently diagnosed C+ male who is 3 years old.  Only one sibling from that breeding and I spayed her with the diagnosis of Angus.  Testing results are going to be sent on his sibling and nieces and nephews.  Not possible on parents since they are both passed but parents tested negative, mother several tests but father passed away after one. Once actual testing information is available I will share that with you and Lora who is participating in both the DNA and diet testing which I find awesome of her.

See not that was hard at all.  Just take that first step and we can all help each other.  Nothing is so terrible we can't come together and work on as a family of caregivers for this wonderful breed.

I'll say this again....Stop worrying about a reputation you feel you can't tarnish because I promise it isn't that important in the end and actually it's a small world in mastiffs and probably everybody already knows anyway...and of course probably exaggerated by the gossip mill.



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Teresa

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Reply with quote  #70 

Well said Sherry. The thing is, there's no shame in breeding it if you don't KNOW it's in your lines. If the girls truly are carriers (which is not for sure yet) and they show no symptoms, then we are kind of at the mercy of testing their sons... Where the shame lies is with people who DO test and cover it up or people who choose not to test because it's easier to bury their head in the sand...


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Reply with quote  #71 

Update............

After speaking with Bill Newman re: Danny Fund, Giger, Anna May and Paula Henthorn at UPenn, I've come to the conclusion that there's no significant money for cystinuria research at present.

There are extensions on an existing grant, but no new funding.

Blood & urine specimens have increased as of late, but there is still a need for samples from affected dogs which are unrelated, as related dogs can skew results & findings.

Researchers have been paid by the Vet facility at UPenn for their time, but salaries have not been paid to researchers, or lab assistants. Primary researchers do not have the time for lab work & research and if hiring lab people cannot be funded, then the pace will slow on cyst. research until more funding comes in.

The economy has hurt the flow of money and the general funds including Danny's Fund is not soley earmarked for cystinuria research. Those dollars build in the fund and then get distributed for various Mastiff issues including cyst.

So there you have it!

We have the researchers willing to proceed.
We have the science that can help discover a DNA identifier.
We have limited time & effort being spent by researchers on cyst.
We don't have significant funding for cyst. research.

Researchers would like to get paid for their time & effort, nobody likes working for nothing and funds are just not there!

The next move is up to us!

Suggestions are welcome! 


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margelutz

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Reply with quote  #72 
Blood & urine specimens have increased as of late, but there is still a need for samples from affected dogs which are unrelated, as related dogs can skew results & findings.

HI Steve ,Im lost on this one >)
I thought they needed related dogs ?? so we should not send in blood from off springs of Postive s Or litter mates that are postive??

Thanks Marge


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HarmonyMastiffs

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Reply with quote  #73 
Me too, what is the difference between related and unrelated within their testing, or should I say, they should be separate...???  I would think they need both to weave a web????

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steveoifer

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Reply with quote  #74 
They need both, but if a general population is all related then it can skew results. I was just conveying my general conversation with Paula Henthorn regarding popular sires and the impact on research. Don't read too much into this, just focus on their need for blood from affected dogs and money.

It would be wise not to send any money to UPenn as it may drift into general funds and may not target the area that we wish.  Also not good to send checks directly to researchers as researchers aren't going to want to run to make bank deposits for every $10 check they receive.

I'm willing to establish a separate bank account for this purpose. Or anyone of you could do it if you so choose, it doesn't have to be me.

This money would then accumulate and be submitted at the proper time for cystinuia research.

If you decide to send the funds to me, send it to:

 Steve Oifer
14 Marseille terrace
Morganville, New Jersey 07751

I spoke to accounting and setting up a tax free status for this is a pain in the ass, so for small contributions that get distributed short term, it's easier to do it directly into a separate personal account earmarked for charity.





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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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steveoifer

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Posts: 9,230
Reply with quote  #75 

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.


__________________Send donations to MCOA as above!


__________________
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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