# Remembering Lola…an update on GME research



## pammy4501 (Aug 8, 2007)

*Disclaimer...this is a very long thread with detailed info on GME/NME.*

*It has been almost one year since my Lola lost her fight with GME. She lost her struggle on 10/14/11. It seems like so much longer for some reason. I still think of her everyday. I will never forget my brave little girl. *

*But, I would rather focus on where we have come and what we have learned over this past year. As most of you know, after Lola died, I started a fund page at the Morris Animal Foundation with the goal of becoming a sponsor for a training grant involving Dr. Renee Barber at the University of Georgia (co-sponsored by The Pug Dog Club of America - Study ID: D10CA-406). This study worked to identify specific genetic mutations responsible for GME/NME. Identification of the genes associated with NME will improve understanding of the disease, allow for the eventual development of DNA tests and potentially help in the development of more directed treatment strategies.*

*Over the next many months we gathered a total 99 gifts and a grand total of $5100.00 went to this very important research project. But not only money was raised; we also collected over 20 DNA samples for Dr. Barber and her project. *

*So, to keep you all up to date I want to share what has been learned. First, I learned that Lola had NME. This was discovered because I donated her brain to the study and analysis of her brain tissue gave me an answer to that question. Currently, NME is still a very devastating disease. Most dogs with NME die even if they receive treatment. Lola lived for 23 months. *

*I have been able to view the final study. To see the actual hard copy of the study I had to sign a non disclosure agreement. I cannot share that part of the study until it is published. But as a sponsor I was entitled to read it. There is however, information that I can share. *

*This is the lay version of the study summary:*

*Results: Pugs, Maltese and Chihuahuas with NME Share Similar Genetic Abnormalities*
_Necrotizing meningoencephalitis (NME), a fatal inflammatory disorder of the brain and its surrounding membranes, primarily affects small dog breeds including Pugs, Maltese and Chihuahuas. The cause of NME is unknown; however, it is known to be inherited within families of Pugs, which indicates that genetic factors play a role in its development. Dr. Renee Barber, funded by a Morris Animal Foundation Fellowship award, investigated the significance of two previously identified broad genetic regions of interest that may be associated with Pugs developing NME. Dr. Barber and the research team confirmed that these regions (on two specific chromosomes) predispose some Pugs to this condition. These results were recently published in the Journal of Heredity. _

_The researchers have also completed a preliminary genetics study in Maltese and Chihuahuas, which suggests that these breeds have a change in their DNA on a chromosome (matching one found in Pugs) that contributes to NME development. This finding supports the hypothesis that Pugs, Maltese and Chihuahuas with NME share similar genetic abnormalities. These findings are a critical first step toward identifying the genes associated with NME. A better understanding of the genetic basis of NME will lead to the development of DNA diagnostic tests that will improve patient care and disease prognosis and help prevent the disease by providing for more informed breeding decisions. This fellowship is also providing a promising young veterinarian with research training that will greatly increase her ability to have a positive impact on animal health throughout her career. _

_This study predominately focuses on the Pug, Maltese and Chihuahua breeds. However, NME occurs in many small breed dogs, including Llasa Apso, Boston Terrier, Papillion, Pekingese, Pomeranian, Yorkshire Terrier and West Highland Terrier._

*And we were not alone in this study (as research doesn’t exist in a vacuum). I just came across this news article on the “wire” that mentions the team at U of GA and GME research and their collaboration with University of Florida. It was a nice summary of the progress of GME/NME research. (Please note that Dr. Schatzberg is no longer on the University of Georgia team and is now working in New Mexico, even though he is mentioned in the article as still working there.)*

_GAINESVILLE, Fla. — By analyzing the genes of bacteria, University of Florida researchers have moved a step closer to pinpointing how two brain disorders common in small-breed dogs occur._

_The researchers found that the bacteria, known as Mycoplasma canis, invade dog’s cells and suppress their immune system responses._

_“This could explain how the bacteria are able to enter the brain in certain circumstances,” said lead investigator Daniel Brown, Ph.D., an associate professor of infectious diseases at the UF College of Veterinary Medicine. “If our theory is correct, it is possible that antibiotic therapy aimed at the mycoplasma could be beneficial if the condition is diagnosed early enough.”_

_The findings, which appear in the August issue of the Journal of Bacteriology, were also presented at the annualmeeting of the International Organization for Mycoplasmology in France._

_The researchers studied two common brain syndromes called granulomatous meningoencephalomyelitis, orGME, and necrotizing meningoencephalitis, or NME, which occur primarily in small toy-breed dogs such as pugs,Malteses, Yorkshire terriers, Chihuahuas and Pomeranians. The diseases affect the central nervous system,causing brain damage and symptoms such as seizures, decreased alertness and difficulty maintaining balance. There is no cure, but drugs can control the brain inflammation by suppressing the immune system. _

_No clear data exist on how widespread the disorders are._

_“Although reliable information on new and existing cases is pretty scarce or nonexistent, inflammatory central nervous system disease is certainly one of the most common problems we deal with as veterinary neurologists,” said Christopher Mariani, D.V.M., Ph.D., an assistant professor of neurology at North Carolina State University’s College of Veterinary Medicine. Mariana was not involved in the UF study._

_The syndromes previously were thought to be caused by a virus or by an attack of the body’s own immune system. *But University of Georgia researchers Renee Barber, D.V.M., and Scott Schatzberg, D.V.M., Ph.D*., and colleagues, including Brown, reported earlier this year that whereas viruses were absent from the brain tissues of dogs with the diseases, the bacterium Mycoplasma canis was unexpectedly common. Interestingly, the researchers also found traces of the bacteria in some dogs that did not have the disease. _

_The bacteria would not have been detectd by the methods used previously to search for a presumed viral agent. _

_In the new study, Brown and colleagues examined five strains of Mycoplasma canis isolated from three different parts of the body — the brain, the genital tract and the throat. _
_They found no difference between the genetic makeup of the bacteria from brain tissue and that of the bacteria from other sites. _

_What they did find was evidence that the bacteria don’t just sit on the surfaces of cells, but actually penetrate inside cells. That may be what enables entry into the bloodstream and eventually, to the brain, the researchers said _

_“This finding is tantalizing, because it may offer an explanation as to why scientists have never been able to specify a viral, autoimmune or other cause of GME and NME,” Brown said. _

_In addition, different strains of bacteria were not equally efficient at suppressing the dogs’ immune responses. _

_The researchers are continuing to analyze the effects of bacterial infection on immune system cells known as macrophages to determine how the bacteria could breach the blood-brain barrier. Later, they will extend their studies to examining how the bacteria interact with different types of brain cells._

_“The study is intriguing, but more work needs to be completed to determine the significance of these bacteria as a possible cause of GME and NME,” said Karen Vernau, D.V.M., an associate clinical professor and chief of neurology/neurosurgery at the University of California, Davis’ College of Veterinary Medicine, who was not involved in the study._

*So what does all that mean?? It means our part of the sponsored study is done. Dr. Barber has accepted a clinical residency position in the neurology department at U of GA and currently can’t devote her time right now to research. However, if the U of GA or the U of FL team submits a research proposal to MAF, it will certainly be considered for funding as NME/GME falls clearly within the MAF mission. It does look like the team has made some good progress towards finding out more details about the disease. I was able to ask Wayne Jensen, the chief scientific officer at MAF questions I had regarding GME and bacteria causes vs. auto immune disease. He said that the preliminary data suggests that a bacterial infection is a component of the disease, but more data is needed to prove this new hypothesis. He pointed out that there could be multiple factors involved, including the bacterial infection, to trigger disease development. It still is an exciting find to me and certainly pushes the research forward in a new direction.*


*High quality DNA was only extracted from 7 NME affected Maltese and 24 control Maltese. Additional samples are needed for the study to continue to move forward. This could take up to a year. So, at this time, they are relinquishing funding and will continue when sufficient samples are present. *


*I am now thinking of what to do with the fundraising page. I can either re-tool it to collect funds for another study or general funds for dog causes. Or I can just take it down. I find that I am strangely attached to the page. It is what I have to remember a great dog with a heart of gold. I am open to suggestions on this one. I just don't think I want to take it down. None of this would have happened without my friends here at SM. This is why I am sharing what I can at this time. Thanks for reading this if you actually got the end of my long story!*


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## Snowbody (Jan 3, 2009)

Pam - really interesting (what I can decipher of it being non-medical) but to see there may be a link to bacteria cause rather than a virus was an eye opener for me. Anxious to find out more of the findings when the study is published. Any timetable for that? Thanks for sharing what you could. 
Don't know what to say about the donation page. I think it is a beautiful reminder of Lola and all who cared about her so much, to keep up.:wub: Hoping that something will come to you to keep it going. Maybe another study still related to Maltese. Anyone doing anything on liver disease? How long do you have to decide?


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## hoaloha (Jan 27, 2012)

Pam, I think Lola's page is a beautiful remembrance of her :smcry: Lola and all of your efforts are a hope for what progress is happening and is to come. I read through your entire post--- I am fascinated with the findings!!!! what a breakthrough- especially with the isolation of the organism, Mycoplasma canis. This certainly has strong clinical implication as it can be detected by PCR in the CSF via spinal tap. I hope the research moves forward. I hope you keep Lola's page up and hopefully as the research continues, there will be more ways for us to help! Lola sounds like a very strong and special girl with an equally strong and special mom


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## pammy4501 (Aug 8, 2007)

Snowbody said:


> Pam - really interesting (what I can decipher of it being non-medical) but to see there may be a link to bacteria cause rather than a virus was an eye opener for me. Anxious to find out more of the findings when the study is published. Any timetable for that? Thanks for sharing what you could.
> Don't know what to say about the donation page. I think it is a beautiful reminder of Lola and all who cared about her so much, to keep up.:wub: Hoping that something will come to you to keep it going. Maybe another study still related to Maltese. Anyone doing anything on liver disease? How long do you have to decide?


Sue, there was a study by Dr. Sharon Center about identifying causes of liver disease in toy dogs. But it is in it's final stage,a nd her final report is due to MAF, so we missed that one. But I am looking for a good cause.



hoaloha said:


> Pam, I think Lola's page is a beautiful remembrance of her :smcry: Lola and all of your efforts are a hope for what progress is happening and is to come. I read through your entire post--- I am fascinated with the findings!!!! what a breakthrough- especially with the isolation of the organism, Mycoplasma canis. This certainly has strong clinical implication as it can be detected by PCR in the CSF via spinal tap. I hope the research moves forward. I hope you keep Lola's page up and hopefully as the research continues, there will be more ways for us to help! Lola sounds like a very strong and special girl with an equally strong and special mom


I found it very exciting as well Marissa. Besides identifying the gene, I was always hopeful that improved diagnosing and treatment regiemes would result from the research. Having a genetic marker will help responsible breeders, but we know that so many won't avail themselves of this. We will still see dogs with GME/NME. so better treatment is essential.


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## socalyte (Nov 15, 2010)

Wow, that was a lot of amazing information. I'm so glad you shared. I've been thinking about Lola a lot and was planning to donate on the anniversary of her crossing the Rainbow Bridge. 

I like the idea of keeping the page up-- it's such a wonderful memorial of your beautiful girl. I know that your heart still aches from your loss. Perhaps you can just mention that donations for the research are in a temporary hiatus. Does any money donated have to be sent somewhere right away or can it be held?


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## pammy4501 (Aug 8, 2007)

socalyte said:


> Wow, that was a lot of amazing information. I'm so glad you shared. I've been thinking about Lola a lot and was planning to donate on the anniversary of her crossing the Rainbow Bridge.
> 
> I like the idea of keeping the page up-- it's such a wonderful memorial of your beautiful girl. I know that your heart still aches from your loss. Perhaps you can just mention that donations for the research are in a temporary hiatus. Does any money donated have to be sent somewhere right away or can it be held?


 I will have to ask that question. But I am thinking that I will just have it go to the general dog health fund for now. If an interestesing study pops up, we can always route the funds that direction. Thanks for reading all of this. It's a lot if info, and has been quite a educational journey for me. I just wanted to share the progress.


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## Lacie's Mom (Oct 11, 2006)

Pam -- this study has brought some extremely important and interesting results. The bacteria vs. virus or autoimmune is fasinating and something that, obviously, needs to be further explored. I'm hoping that we can get more samples so that research can continue as we still need to find a cure or something that will help eliminate the loss of our fluffs from these 2 horrible diseases.

I'm so proud to have been a part of the funding for this study and also very glad that SM could do so much to support the research -- both by giving donations and by providing samples.

Lola's life and passing has given siginificant help to this important research, and I'm glad that you honored her by pushing the program/research. 

As far as the page, I would vote for you to leave it up. There will be more research needed -- both for this and for liver stunts, and we can support that going forward. In the meantime, the general fund is, imho, good.


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## allheart (Oct 3, 2008)

Pam, first, I admire you immensely. 

Pam, the resesearch produced amazing results and bless you and Lola and thank you for sharing the results.

Pam, from my heart, PLEASE keep the page up, and the donation portion as well. Perhaps until the study picks up again, and I a sure it will, the donations, could maybe go to owners, whose babies, have this disease, and go towards their expenses. And/or a rescue Organization, that has a baby with GME/NME,

The study produced amazing information. Amazing. 

Of course there are sadly several disease cropping up, BUT, GME/NME is Your and Lola's special cause. 

I am sure there will be another study taken off, from this amazing one. Until then, perhaps, like I was saying, have a GME/NME fund, for those special babies, currently going through this disease and their families. 

This is near and dear to your heart, and rightly so. I truly feel keep Lola and your beautiful page up, continue to collect donations, especialy with Lola's anninversary coming up, and this wll so help the shoes that you have already walked in.

Then when a follow-on study happens, to this amazing one, perhaps the invaluabe information this study produced, will help the future follow-on study, to find a way to completely rid of this terrible disease.

Much Love,
Christine


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## pammy4501 (Aug 8, 2007)

Lacie's Mom said:


> Pam -- this study has brought some extremely important and interesting results. The bacteria vs. virus or autoimmune is fasinating and something that, obviously, needs to be further explored. I'm hoping that we can get more samples so that research can continue as we still need to find a cure or something that will help eliminate the loss of our fluffs from these 2 horrible diseases.
> 
> I'm so proud to have been a part of the funding for this study and also very glad that SM could do so much to support the research -- both by giving donations and by providing samples.
> 
> ...





allheart said:


> Pam, first, I admire you immensely.
> 
> Pam, the resesearch produced amazing results and bless you and Lola and thank you for sharing the results.
> 
> ...


 Thanks for looking ladies. I did re do the fundraising page. Still the same link below my siggy. I decided to funnel any donations to the Vet Student Scholar Program. If something better comes along for GME or a malt specific study, we can re adjust.


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## Snowball Pie's Mommi (Oct 16, 2008)

Pam, just a note to let you know that I did take time to read your post. I want to re-read it again after we get done with Snowball's doctor appointments. However, in the meantime ... thank you for posting the research information for us. It is very interesting.

I'd love to see you keep Lola's page up ... it's a beautiful tribute to her. I am sure you would make sure that any future donations would go to the right cause.


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## Maglily (Feb 3, 2009)

I like the idea of leaving the page up as a memorial and also so that it may inspire more research in the future.


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## maggieh (Dec 16, 2007)

Pam - great idea on the vet scholars! Thank you for doing that, and thanks to everyone who donated so the GME research could go forward!


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## Furbabies mom (Jul 25, 2011)

I have followed Lola's story and read your info that you posted. It is so hard to lose our fluffs but when they go at such a young age, and to a disease that is so devastating and not a lot known about, it is heartbreaking' I admire all the work that you have done to raise money and awareness about GME. I too think that the research should continue and hopefully it will.


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## KAG (Jun 1, 2006)

maggieh said:


> Pam - great idea on the vet scholars! Thank you for doing that, and thanks to everyone who donated so the GME research could go forward!



Yes, yes, my sentiments exactly!!! 

I love you, Pam. Also, I love all who care, and, as always:

F GME/NME and now mycoplasma canis.
xoxoxoxoxoxoxooxoxoxoxoxoxoxooxoxox


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## CrystalAndZoe (Jul 11, 2006)

maggieh said:


> Pam - great idea on the vet scholars! Thank you for doing that, and thanks to everyone who donated so the GME research could go forward!


I agree. Really great idea!


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## pammy4501 (Aug 8, 2007)

socalyte said:


> Wow, that was a lot of amazing information. I'm so glad you shared. I've been thinking about Lola a lot and was planning to donate on the anniversary of her crossing the Rainbow Bridge.
> 
> I like the idea of keeping the page up-- it's such a wonderful memorial of your beautiful girl. I know that your heart still aches from your loss. Perhaps you can just mention that donations for the research are in a temporary hiatus. Does any money donated have to be sent somewhere right away or can it be held?


*Thanks Jackie. I am going to direct any donations to the Vet Scholar Program. If a better study presents itself I will redirect. There was a study by Dr. Center identifying causes of liver disease in dogs. But I asked, and it is really concluding and her final report is due. So for now, the students will benefit!*



Lacie's Mom said:


> Pam -- this study has brought some extremely important and interesting results. The bacteria vs. virus or autoimmune is fasinating and something that, obviously, needs to be further explored. I'm hoping that we can get more samples so that research can continue as we still need to find a cure or something that will help eliminate the loss of our fluffs from these 2 horrible diseases.
> 
> I'm so proud to have been a part of the funding for this study and also very glad that SM could do so much to support the research -- both by giving donations and by providing samples.
> 
> ...


*I'm leaving it up at least for now. For some reason the idea of taking it down makes me sad.*



allheart said:


> Pam, first, I admire you immensely.
> 
> Pam, the resesearch produced amazing results and bless you and Lola and thank you for sharing the results.
> 
> ...


*Thanks Christine!*



Snowball Pie's Mommi said:


> Pam, just a note to let you know that I did take time to read your post. I want to re-read it again after we get done with Snowball's doctor appointments. However, in the meantime ... thank you for posting the research information for us. It is very interesting.
> 
> I'd love to see you keep Lola's page up ... it's a beautiful tribute to her. I am sure you would make sure that any future donations would go to the right cause.


*Hoping all is well with Snowball. I will keep info coming as I get it.*



KAG said:


> Yes, yes, my sentiments exactly!!!
> 
> I love you, Pam. Also, I love all who care, and, as always:
> 
> ...


*Love you too Kerry! We should make tee shirst with the F*** GME logo!! You're the best!*


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