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ForumsGerman Shepherd Dog > DM Death Statistics in the GSD among the PDB members (159 replies)
by Gustav on 03 July 2012 - 19:15 |
| In the words of an earlier poster, if want to donate to U of Florida.....donate.....if you don't for whatever reasons, then don't and move on....sheesh! |
by beetree on 03 July 2012 - 20:17 |
| Oh brother. I know this subject is mostly a non-issue with you Gustav, so I'm not surprised you miss the finer points of this ongoing tirade. This specific issue is whether or not the Dr. with the most promising answers is doing his research study at, and is funded by the Univ. of FL. I would like to know that simple bit. People react like it is a trick question. The donations Marjorie mentions she so generously donated, are spent and gone on past research. I am trying to find out what is going on, PRESENT tense, as in today. The roadblocks and objections as to "how dare I" even question the "blah blah blah" is bizarre to say the least. None of my questions, would bother any researcher or Univ. Director of Dev., at any major University, Ivy League or State, for that matter. Screaming POLITICS, does what? It is part of life, learn how to navigate through what is in your way. The obvious fact that I get no answers, from this Dr's. most loyal followers, is becoming an answer for myself, by default. You think I'm blinded by emotion on this subject most of the time! Well, maybe so, but in this case I want those emotions to help guide people towards finding the right answers, and not based on a bias for or against, a particular Dr. |
beetree by marjorie on 03 July 2012 - 21:35 |
| I dont know what is so damn difficult to understand. Memo section of the check should be marked "for DR CLEMMONS DM research ". It cant get much clearer than that. I have requested that a paypal account be set up so people can paypal donations, if they cant make larger donations. That way, even if they send in a dollar or two, which is not worth writing a check over, the money will add up. I have mentioned that there are approximately 1,400,000 GSDS and if everyone sent in ONE dollar for each GSD they owned, that would add up to $1,400,000 for DM research. Dr C's research is funded by the U of Fla Foundation, which people donate to, as it is a charitable foundation and people get a receipt for taxes, and the U of Fla is always where he has done his DM research since he has been at that University! No, it is not true that all my donations went to past projects, so I dont know where you came up with that one! Missie T was in an experimental project, which did amazing things for her, as well as the other dogs in the project, but we need more money to come in that is marked for DM research so that project can continue and DM research can move ahead. The Flash Test must be able to become available again as it was founded upon research of GSDM. The latest project was halted to to lack of funds, for once again, funds going to the U of Florida must be earmarked "FOR DR CLEMMONS DM RESEARCH" ! If it is not marked specifically for DM research, it will go to other research projects. He is not interested in your damn steak dinner, but finding a way to help DM dogs. I know I clealy said the memo section of the check must be filled out to reflect donation are for Dr Clemmons DM research. There- I have said it again! I have said it until I am blue in the face! You just refuse to read or perhaps you have a reading comprehension problem.. I always have people asking me to try to get the U of Fla to set up a paypal account for DM research, so they can send in a dollar or two at a time, weekly. It adds up. The money will not go to him, personally, but to the U of Fla foundation, who will be setting up the paypal account, hopefully, to make it easier for people to donate DIRECTLY to DM research. I do not see the big mystery you seem to be trying to create. |
marjorie by Betty on 03 July 2012 - 21:35 |
| I think Beetree has a valid point guys. Just earmarking something on a memo line does not obligate the receiptitant to follow your wishes. And if the University does have an on-going research project why is it so hard to find the name of it? |
by marjorie on 03 July 2012 - 22:03 |
| ---> Just earmarking something on a memo line does not obligate the receiptitant to follow your wishes. It certainly does- if they did not do that, they would be breaking the law!!!! They would lose their charitable foundation status! That would be a very serious Federal offense! People get a tax deductible receipt for their taxes for the government which specifically mentions the receipt for which the donation was given and to where it was applied! It is no different than breed clubs donating funds to the AKCCHF for a specific purpose. Do you question if the AKCCHF follows the guidelines as to what their earmarked donations are sent in for? This is no different! What is with the insinuations that the U of Fla is corrupt, and not giving funds to the departments for which they are allocated??????? This is just crazy talk! Not to even mention the fact that in a charitable foundation, every penny must be accounted for, to the Government. The government is very strict and does not tolerate BS! There must be receipts for everything to show where the money has gone. Do you really think a MAJOR University, like the U of Fla, would fool around with the GOVERNMENT???? Again, I have stated over and over that research has been halted temporarily, due to lack of funding. Sadly, research must be paid for, it cannot be done for free. Dr Clemmons never took a penny from his research projects, personally. To him, DM research is a challenge, not something to be paid for doing. However, grad student and assistants, etc, must be paid. When he applied to the AKCCHF for a grant, he even put in the grant that he would NOT receive or take payment, personally, but that all payment would go towards the people who assisted in the project, running the tests. Assistants must be paid! People who process the tests must be paid! If we had funding, we would put the Flash Test back in place, but samples must be processed and if there is no money to process them, it cannot be done. Is that really so very hard to understand???? The treatment used in the experimental program was very expensive, so it was done on a small scale, and after 6 months, the funds were not there to continue to purchase the treatment. Sad, because Missie T and several of thre other dogs in it were able to get up and walk again, once down- not well, but enough to go from room to room or stand up to be able to drink some water. Better than being down, for sure!
Marjorie
http://www.gsdbbr.org The German Shepherd Dog Breed Betterment Registry BE PROACTIVE! http://mzjf.com --> The Degenerative Myelopathy Support Group http://www.mzjf.info/hgate Heaven's Gate |
by beetree on 03 July 2012 - 22:34 |
| Good point about the tax exempt thing Marjorie, but you really should stop with the wild accusations. Why don't you answer the simple question already posed, or maybe you know the answer to whom is writing the acknowledgement letter of the checkwriters (donees)? It makes no sense to have this as a duplicate task, that is why I ask. It sounds like it could also just be going to the Neurology Department, for whatever research is currently going on. Not that that is a bad thing, just it wouldn't have been what I intended if I sent in a check. Which I won't send to you if I do want to donate to the Neurology Dept at Univ. of FL, because I can easily do that myself, directly on-line where everything is easily understood. |
by marjorie on 03 July 2012 - 23:01 |
| ---> whom is writing the acknowledgement letter of the checkwriters (donees Its from the University of Florida Charitbale Foundation!! I know I mentioned that several times.. :::::sigh::::::::: No, again funds earmarked for DM research goes to DM research, not just to the neurology dept unless one earmarks it for the neurology dept. This is how the Charitable Foundation at the U of Fla works. If one does not earmark their donation, it can be utilized for any research, but if earmarked, that is where it goes- to the project for which it was earmarked. I am the one, again, who wants money to be able to go directly to DM research, even if it is one dollar at a time. If it goes directly there, it will get there quicker, and we need quick at this point in time. People just dont write checks for a dollar or two, nor will they write checks on a weekly basis, for a dollar or two, or even $10. People have been begging me to make it easier for them to donate smaller amonts of money, which they can do more frequently, than writing a check for a larger amount which is difficult in this kind of economy. One would still get a receipt. With the money going directly into the DM research fund, it doesnt have to go through channels to get there, and with paypal, the money would be available immediately No wait time to make sure the check clears. Every day in the life of a DM dog is important, and its always a race against time :( If ONE life can be saved by making the money move faster, and allowing many small donations, rather than waiting for larger ones to come in, its well worth it. There have been man y times when I see a plea for help for injured rescue dogs. Paypal makes it easy to send donations for the care of the dog. If it works that way, it can certainly work for DM. Not long ago someone posted a plea ofr a rescue dog needing help, on this forum. Over $1000 was raised in 2 days! That is my dream, for DM research. Many just simply cannot afford big donations, now. The economy sucks, but the little donations add up fast :) I have a spare change jar in my house. At the end of every day, I put my spare change into the jar. )Well, its actually not a jar, but one of those gallon containers that ice melt was in) Last time I brought it to the change machine at the bank, i had a few hundred dollars in there. I cashed it in and sent it to DM research. Marjorie http://www.gsdbbr.org The German Shepherd Dog Breed Betterment Registry BE PROACTIVE! http://mzjf.com --> The Degenerative Myelopathy Support Group http://www.mzjf.info/hgate Heaven's Gate |
by beetree on 03 July 2012 - 23:04 |
| NO kidding. I am way beyond your nickle and dimes. Just answer the original simple question. Back to that. And I have no further questions. Ever. Again. Thanks. |
by Gustav on 04 July 2012 - 00:41 |
| Beetree, I understood YOUR issue the first time you wrote....trust me....haha. Its like dog training if you give a command numerous times without performance, its no longer training but badgering and counterproductive. After the 5th time(far too many) of requesting an answer, I WOULD think you should figure out that you are not going to get the answer you want to hear. For whatever reasons!!!! So why the badgering....it is not working....move on! I would expect more from a person who trains their dog ....Right???? |
by marjorie on 04 July 2012 - 01:00 |
| I did answer the question- numerous times. You asked who sends theacknowledgement letter and I said the university of Florida foundation. I cannot comprehend what you dont understand about that. I said Dr Clemmons was researching with a new treatment, but it was expensive and the funding we had left was used up. I think thats pretty clear, as well. I said my down DM dog, and others were able to get up and walk again, while on the new experimental treatment and I said I would like to see the Flash test back in operation but we dont have the funds to process them at this point in time, which is why I would like paypal plan instituted. I dont understand what you dont understand. Its not a matter of training, Gustav- its a matter of answering the question over and over again, and giving my reasons for wishing to start paypal funding. There is really no way to satisfy Beetree. Its like saying *good morning- what do you mean by that*... She keeps on picking up rocks, when there aint nothing underneath them- no snakes, no dirt, just rocks laying there. Is like she isnt even reading the answers to the questions she keeps asking, but just keeps on asking to be difficult. One of us has to be a moron- maybe I am the moron, and dont understand just what in the holy hail she is looking for.
Marjorie
http://www.gsdbbr.org The German Shepherd Dog Breed Betterment Registry BE PROACTIVE! http://mzjf.com --> The Degenerative Myelopathy Support Group http://www.mzjf.info/hgate Heaven's Gate |
by marjorie on 04 July 2012 - 01:01 |
| ---> I am way beyond your nickle and dimes. Well good for you :)
Marjorie
http://www.gsdbbr.org The German Shepherd Dog Breed Betterment Registry BE PROACTIVE! http://mzjf.com --> The Degenerative Myelopathy Support Group http://www.mzjf.info/hgate Heaven's Gate |
by Gwenith on 04 July 2012 - 04:08 |
| My heart aches. My GSD tested as "carrier" via Dr. Coates. His internist who is very good friends with Dr. Coates says my Blade has full blown GSDM and it doesn't matter about the test. There are flaws in the GSD breed for this particular test. My Blade will be PTS in 10-12 days if I am lucky. But it may be Friday if I am not. He has had had chronic GI which no Vet I take him to can help him now. And on top of that today he had raging UTI from GSDM. I am so devastated. I don't want to live or breath. Without him by my side I nothing. I don't believe this test is accurate for GSD's and never will. I will place him in Marjorie's database. I told his breeder today I have to set him free. She cried. I never thought she cared about him because I was not a National Schutzhund trainer. But surprisingly she does. She sent me a prayer my Facebook. But I am in so much pain I can't think straight. Gwen |
by hexe on 04 July 2012 - 05:28 |
| Gwenith, I realize it's of scant comfort, but know this: you do not grieve Blade alone; the hearts of thousands of others who have lost GSDs they loved to this stealthy thief we call degenerative myelopathy are with you in spirit, and each time we hear of another victim, the barely-healed scar in our own hearts bleeds anew for that dog, and in memory of the ones we lost as well. I am grateful to your breeder for her compassion, as it would be an additional injury to learn that the person who brought Blade into the world had forgotten that first and foremost, these dogs are companions, family members, not tools... Would you please indulge us, the ones who will shed tears with you when you tell us Blade has been freed, post your favorite picture of Blade here, so we can see him as the dog he truly is? Not in this thread, with it's arguing and acrimony, but in this one instead, which is serving as a memorial of sorts to all the dogs boardmembers have lost to this disease, as well as other heritable diseases: http://www.pedigreedatabase.com/german_shepherd_dog/forum.read?mnr=605915 That thread should remind us that the toll this disease takes is real, regardless of the form in which it strikes...and that it's impossible for there to be too much research into the causes of it in all it variations. Gwenith, my heart breaks for you and your Blade. |
by hexe on 04 July 2012 - 06:02 |
| I think this pretty much sums up this discussion right about now: I understand where beetree is coming from, and I also understand why she's asking the questions she's been asking--and it is NOT because she favors one vet's work over another's, or doubts that there may be questions that still need to be answered about the disease. BUT--I also understand why Marjorie's responses are so emotionally charged...If there had been more interest, more effort, more dialog and involvement by GSD owners back when the thread below was posted, then perhaps the work Dr. Clemmons has been doing for better than 30 years (that's how long I'VE been aware of it--it's probably longer than that) wouldn't have been financially abandoned by U of Florida: http://www.pedigreedatabase.com/german_shepherd_dog/bulletins.read?mnr=283635 What was feared then unfortunately did come to pass, and everyone who owns a German Shepherd Dog is at risk of paying an awful penalty because of this. Let's see if we can't get past the animosity, and get this work fully funded somehow, whether it's privately or is by the university itself. Marjorie, although you are one of the most knowledgeable laypersons in the world when it comes to this disease, you are probably not the best person for the public relations/fundraising activities--you're far more effective, from what I've observed, when it comes to educating dog owners about the disease itself, and teaching them about managing an affected dog so he or she has the best possible quality of life. It's difficult to present just the *right* amount of passion for the cause without showing so much emotion that it's off-putting to potential donors. beetree, I think I recall you mentioning some experience with writing grant requests...am I correct? Would you be interested and willing to become involved in that capacity? I would think that it would be best if whoever was going to be doing the grant-writing communicated with Dr. Clemmons directly, so there's nothing that gets 'lost' in the relay of information, and it was my experience that Dr. Clemmons was easily reachable and readily available in the service of researching this disease...so I believe it should be simple enough for an experienced grant-writer to work with him to craft successful proposals. We can bicker back and forth about the OFA test's value or lack thereof, or we can come together as a community of GSD lovers to fight back against something that steals them from us far too early and far too cruelly. |
by beetree on 04 July 2012 - 10:35 |
Gwenith, I am so very sorry for what you are going through, I know your heart is breaking.  Gustav, I will stop, now. Hexe, You are a great communicator. I agree with your post!  I certainly might be able to help, I will PM you. (Have a great 4th of July, to everybody. I'll be leaving this thread be for today, I want to stay happy.) |
by Gustav on 04 July 2012 - 11:48 |
| Beetree, my request was only in reference to the question, lol, otherwise I enjoy your posts as does everyone else. I also sympathize with anyone who experiences a life threatening complication with their dogs. Trust me. I guess I am kinda like a General or Sgtmajor, in that I have been in the breed so long and seen so many of these things, I try to view them pragmatically instead of emotionally. I turn my feelings toward educating myself toward how to prevent things as opposed to curing things. There's a place for both types, that's why I support you and Marjorie in what you seek, while at the same time try to educate some people that there are ways to enjoy this breed and significantly reduce your chances of dealing with this type of malady through genetic selection. We both are working for the same thing, just express ourselves and our a cations differently. Happy 4th to you also! |
by marjorie on 04 July 2012 - 14:27 |
| Gwenith, I am wrapping my cyberarms around you and holding you tight. I am so saddened about Blade, and the pain I know you are feeling. It hurts my heart each time I see another who the disease has preyed upon. Its one bad serial killer that needs to be laid to rest, just like it does to our beloved fur kids. Its horrid choice to make that final decision, but concentrate on what and when is best for him. Thats true love... Marjorie http://www.gsdbbr.org The German Shepherd Dog Breed Betterment Registry BE PROACTIVE! http://mzjf.com --> The Degenerative Myelopathy Support Group http://www.mzjf.info/hgate Heaven's Gate |
by marjorie on 04 July 2012 - 14:57 |
| Hexe, that was pretty funny! We could also use a clip of Abbot and Costello's "who's on first"..LOL!
Marjorie
http://www.gsdbbr.org The German Shepherd Dog Breed Betterment Registry BE PROACTIVE! http://mzjf.com --> The Degenerative Myelopathy Support Group http://www.mzjf.info/hgate Heaven's Gate |
by starrchar on 04 July 2012 - 15:40 |
| Gwenith, I'm so sorry to hear about your precious Blade. My heart aches for you and tears flow as I write this. My girl, Shelby, also has DM also and I don't think she will be here in a few months. We know the outcome of this horrible disease, but we are never prepared. Sending prayers and hugs... Hexe, Excellent post- you made so many good points! Marjorie, I think anyone who has a dog with DM or has lost a dog to DM wants to get to the bottom of this, but it is all quite overwhelming and confusing. I really appreciate all you've done to educate and raise awareness about DM. Your support website has been very helpful. I still don't know what to think about the DM DNA testing. My dog tested as affected/at risk on two separate tests from different labs and she has full blown DM. So, in this regard the test was accurate. Nothing is perfect and is it not possible that this test, as with many diagnostic tests for a variety of diseases, produces inaccurate results at times? I'm sure you have written about this, but with so much that has been written I wouldn't know where to begin to look. You mentioned in another post, "They have already admitted, in writing, that in certain breeds the type of DM the breed gets is not caused by the SOD1." So, if the GSDs don't have the SOD1 gene that the DM test is screening for, what causes the test results to come out as affected/at risk as opposed to carrier or clear? I am not a biology major or geneticist and am just trying to understand all of this. |
starrchar by marjorie on 04 July 2012 - 16:16 |
| --- > So, if the GSDs don't have the SOD1 gene that the DM test is screening for, what causes the test results to come out as affected/at risk as opposed to carrier or clear? I have no idea :( My expertise is solely GSDM
Marjorie
http://www.gsdbbr.org The German Shepherd Dog Breed Betterment Registry BE PROACTIVE! http://mzjf.com --> The Degenerative Myelopathy Support Group http://www.mzjf.info/hgate Heaven's Gate |
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