PLEASE help if you can!

Crossposted with permission.

'BG" is Brussels Griffin breeders, who are doing a LOT amongst themselves and already pushed through one research grant by showing *united club support* internationally for SM research that is also helping cavaliers.

AKC CHF Grant # 954 - Identification of Genes Causing Chiari I Malfo
Posted by: "[email protected]" [email protected] gpc083
Fri Mar 28, 2008 1:24 pm (PDT)

I just spoke with Erika A. Werne who is the Director of Canine Research and
Education at the AKC CHF about the "pending" grant #954, Identification of
Genes Causing Chiari I Malformation in the CKCS.

Initially the CHF expected to hear back from the two US-based CKCS clubs by
the end of the year. Neither club has yet given the AKC CHF the approval for
the grant money. (She did say that one of the clubs has of recent date been
in contact with a list of questions so that may be a hopeful sign.)

I asked Ms. Werne when did she expect to know for certain whether the grant
money would be given to the University of Montreal and she said it would be
decided by the end of April. She also told me that if the two US-based CKCS
clubs do not support the grant that the AKC CHF more than likely will NOT fund
it.

I then asked her about the donor-advised direct contributions that the BG
breeder community used for their recent fundraising. Ms. Werne said that we in
the cavalier community can do likewise and that if the AKC CHF saw that the
grant had generated enough interest with private donations, that it might
make all the difference.

So, off I went to the AKC CHF site to record my own donation towards this
most important research grant. I ask you all to PLEASE consider doing the same.
Your contribution can be small, any amount is allowable. In fact, Ms. Werne
said that the BG community had many, many donations of small amounts that did
add up quite nicely.

For so many years now we have been chatting away on the various CKCS lists,
HOPING for the day when we might have access to a DNA test for SM. Here is
your chance to do something positive. Please spend a bit of your money to help
secure the healthy future of the CKCS by helping to fund the grant to find the
genes responsible for SM. Thank you for your kind consideration and below
is the information on how to donate to AKC CHF 954. Please let the CHF know
that this grant is IMPORTANT to all of us who love the CKCS!

Gerri Pryor Carter


_www.akcchf.org_ (http://www.akcchf.org)

Select option: Donation
Please specify amount:
Please direct my donation to: GRANT 954


And of course, permission is not only granted to cross-post but also greatly
appreciated!

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If anyone within the clubs wishes to raise why this is NOT being funded within the US clubs, please do! If the genome research does not proceed, it may be decades before a DNA test for SM becomes a possibility, or the inheritance is understood, as it has taken several years to collect and do the preliminary work on the DNA that is ready for this research (about half a decade!!). Almost ALL this initial work has been funded by small individual donors like yourselves and small grants.

If the clubs will not support such critical research, it sure raises lots of questions in my head about what they consider to be a serious health concern and what the health trusts are for. Already lack of support led to the researchers having to exclude MVD from this groundbreaking research. Imagine, we COULD have had a genetic test for MVD and understood, at last, the mode of inheritance, along with better understanding of SM. But that will not now happen for many, many years as much work will have to be wastefully duplicated to do such work in the future.

On donations towards this research -- small amounts all add up so please don't not give because you feel you cannot give much or enough. Any amount is enough! ! Consider even as little as $10 and give up eating lunch out for a couple of times... a lot of $10 donations add up very fast. A $50 or $100 here or there adds up even faster.

You can use direct debit, credit card or Paypal. NB I have put specific information on how to complete the online donations forms a few posts down now!!.

Thanks for bringing this to our attention! I am definitely donating to help find the genes responsible for SM!

Is there a way to direct the donation to GRANT 954 when using paypal or credit card? I tried both and wasn't given the opportunity to earmark it. If not...no problem, I will just donate by phone :blabla:

Karlin said:

If anyone within the clubs wishes to raise why this is NOT being funded within the US clubs, please do!

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Before we adopted Nora, I had contacted another Cavalier Rescue group and inquired about a different dog...and just had a conversaton on the phone with one of this major USA Cavalier club's top people....somehow I mentioned SM and his/her response was 'people make a big deal about it, but the truth is that it simply is not an issue. There are so few dogs that actually have it.' This from one of the top people of a major CKCS group here in the USA!!!!!!!!!!! I'd say that before the money starts to flow from the clubs, education about SM has to happen or a clean sweep of some of the folks at the top!

Once you start the donation process you click some boxes and are given the opportunity to select where to direct your donation. And remember non-US folks -- your currencies are VERY strong against the dollar so a $50 donation only costs you about €35 or £25 -- it is very cost effective and with both Paypal and a credit card, you just pick the dollar donation and don't need to worry about the currency!

Note you can phone toll free to donate too from the donation link, if in the US.

Here are specific directions.

For all options, click on: http://www.akcchf.org/donate/donate_now.cfm

If you want to make a credit card donation, click on: https://secure.qgiv.com/cps_donors/index.php?key=akcfound

Start to fill in the form. You will see that the third section down says "Please select an option".

Pick the first, 'donation'.

When you click this, you immediately get a drop down menu and can choose "I wish to specify a grant". When you select this, automatically a new blank will open where you are asked to put in the number of the grant.

So put in 954 and complete the rest of the form. .

For Paypal:

I don't know if you can designate a specific grant with PayPal. I went partway through the process -- sometimes the form eventually lets you add a comment but I don't know if this does. If it doesn't eventually let you indicate what you want the money to go towards, you could simply email them using this contact form -- http://www.akcchf.org/contact/?nav_area=contact -- and selecting 'donations' for the area. Just tell them you made a donation from whatever your Paypal email address is, and the amount, and clarify it is to go towards this grant.

For cheque or to fax a credit card payment:

Click this link: http://www.akcchf.org/pdfs/donor_form.pdf

And you will get the form and can print and send with a cheque, or donate by credit card. For non US dollar donations don;t send a personal check -- much of your donation will go towards simply paying the fee for the currency exchange. Paypal or credit card are the way to go!

Also: if anyone wants to Paypal me, I will then donate by credit card and indicate it is to go towards the specific grant. But most people with Paypal accounts will have credit cards and your card is the best way to be sure the donation goes to this specific fund.

I'd say that before the money starts to flow from the clubs, education about SM has to happen or a clean sweep of some of the folks at the top!

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Sadly your experience doesn't surprise me at all and I agree totally with what you say.

The main SM discussion list has a man on it who is a statistician.He has been given access to scans and pedigrees from over 100 lines of cavaliers. He also speaks to the researchers. He understands how to do the very complex breeding coefficients and statistical predictions for the likelihood of SM appearing symptomatically in various lines. He has said of the importance of this grant-- that breeders may still not understand how bad the current suiituation is and how small a window there now is to save the breed. Period.

He thinks if cavalier breeders understood the severity of the disease, and how SM now almost completely penetrates all lines and how a very dire future is revealed if you run the numbers, that they would pull out the stops for mass scanning programs. He no longer believes piecemeal scanning is adequate -- there simply are not enough clear or A grade dogs.

Please, WE can be part of the solution rather than leaving this to organisations which often do not seem to care and seem more wrapped up in their internal politics and personalities than 'doing it for the dogs'. Let's do it for the DOGS.

If you do not know much about this condition -- many of us on the board have dogs living with SM, or have already had to say goodbye to dogs that suffered too much with SM. My Leo has it and must take daily painkillers.

If you have not seen this -- please have a view so you better understand what this condition can mean for so many of our cavaliers.

There is no cure; there is only surgical intervention to try and alleviate the condition, or pain management by medication, hoping the condition does not progress.

Breeders need the tool of a DNA test to help breed away from this condition. Even screening thousands of dogs will still be a guessing process if breeders and researchers do not understand the inheritance. That is why this grant is so crucial.

I made a donation by credit card and was able to designate the specific grant.

My donation is made in the memory of Charlie and in honor of Bianca, Rory, Madison and the many other dogs I know who have undergone SM surgery.

'people make a big deal about it, but the truth is that it simply is not an issue.

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Isn't that appalling??!!! I had the same response from a breeder about MVD!! People.....pull your heads out of the sand....it's here and it's a reality, we need to deal with it. I've heard of dogs that have been diagnosed and then the owners asked to keep quiet about it. That just saddens me.

Yes, and I of dogs that have been diagnosed and the owners threatened with legal action if they ever associate the dog's kennel name with the condition. The people I really admire are those who immediately took a public role when they had a dog diagnosed and made this horrible condition a public campaign.

I just made a donation using credit card...very easy to do. I didn't realize before that there was a drop down menu.

didn't realize before that there was a drop down menu

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Either did I til I tried entering more info! I was baffled at first and thought I wouldn't be able to specify where the donation should go. It's important for everyone to designate the grant if they donate, so there's a clear show of support for this research!

Thanks for posting the info on how to donate to this really worthy cause.

We unfortuntley lost our precious little man Jack just over 3 weeks ago to unexpected heart failure, at such a young age of only 20 months. We are still devastated and trying to come to the terms with the fact that he is no longer with us.

We made the decision that we would donate his pet insurance money in his memory, and we have been trying to find a worthy cause over the past week or so, and I think this definitely fits the bill!

If you know of any other worthy cause it would be great if you could let me know, and maybe we could split some of the funds as soon as we receive them.

Thanks,
Louise

I'm so sorry for you loss. No age is a good age but 20 months is much much too young. I think you've found a very worthy cause.

Thanks Cathy, loosing Jack at such a young age has really opened our eyes to the seriousness of both MVD and SM. We were aware of them before he passed, but we never thought that we would have to go through this nightmare at such an early stage in his life. He was always so full of energy, hugs and kisses (even up until the morning he passed), that we never saw it coming. So we will give as much as we can to help fight these deadly conditions.

I am so sorry to hear what you have been through. As Cathy says that is truly way too young.

Thank you for posting this, Karlin. I donated and also sent my mom the link. She said she noted this on the form:

This donation is to help eradicate the suffering that my sweet, sweet grand-dog Spencer lives with every day. I hope that grant 954 is able to proceed and spurs positive research so that none of my daughter’s future Cavaliers suffer from this awful disease.

I recently fostered a darling little dog with SM. Bonnie is a funny, happy little girl that was a joy to have as part of our family for the many months she was in foster care. It just about broke my heart to see her distress. At just 13 months her original family decided they didn't want to deal with the "issue" and Lucky Star brought her into our rescue group. Finally, a miracle happened. Bonnie has gone to live with Sandy Ross Smith and her family in Canada. Sandy now has 4 Cavaliers that have SM. She has written a heartwarming and informative book titled For the Love of Ollie. All proceeds from the purchase of her book go toward research of the dreaded syringomyelia. Sandy is an activist working toward finding a better treatment and cure for SM. She is truly an inspiration and a great resource to have. You can read more about SM, Ollie and Sandy by visiting www.fortheloveofollie.com.

Wow....Sandy sounds like a true champion.

Whitney - that's so sweet what your mom wrote about Spencer.

I would so love to see this project get it's funding. Such an important cause.