Support the Whittemore Peterson Institute

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anne

Guest
Andrea on the WPI Facebook page:

Dr. Mikovits tells me this all the time "let the Science speak for itself".Our Science has spoken now we need people to listen. Write your story and speak of the Science and Research that must be funded. The WPI needs federal funding to continue crucial research on XMRV and X associated neuro-immune diseases such as ME, Fibromyalgia, Autism, childrens alzheimers , and a typical MS. Write the President , Vice President , DEpartment of Human and Health Services , NIH, CDC , the senators of your state , congressmen, congresswomen , . Senator Reid is one of the biggest supporters of ME research . Write and thank him for being our biggest advocate in DC. and tell him you demand a congressional hearing into the CDC's misguided treatments of ME. Demand change . Demand respect. Use your frustration , anger and sadness fir all your losses and put that energy into one letter. put a face with this disease , put a life into your letter. Let them know we aren't going anywhere . There are 17 million people suffering / surviving and we want to thrive around the World and we aren't getting better from CBT/GET and vacations!!! We need real treatments , real doctors , infectious disease specialists to treat us. We need centers around the world to specialize in treating the whole disease. it's not a syndrome , it's not an illness that lasts a while . It's a disease . A disease that some are slowly dying from. And others have died. But also tell them about your HOPE. Tell them about the faith you have in them to do the right thing . That's what Democracy is all about . Fighting for the People , speaking for the people . We are the People!!! We can make a difference . We will make a difference !!! All we need is eachother:)
 
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Robin

Guest
I Search I Give -- everyone go there and do searches

I added WPI to the igive list. Anyone know other search/donation engines? You can make your own link. To join http://www.iSearchiGive.com/WhittemorePeterson
Aw, there's only $3 there. That's so sad!

WPI gets $.02/search. 10 searches a day is $.20, and if thirty of us do it, that's $6/day, $180/month, $2,190 a year. It sounds like nickel and dimes but...imagine if we got friends, family, other people with CFS running searches too, even just one a day or five a day. I'm sending an email to everyone in my address book. I do the click to give site every day -- just part of routine and really easy. And, if you can't afford to donate money it's an easy way to contribute.

WPI is on my XMAS list -- they're getting $50, and I'll do online shopping from igive, and run searches every day.

ISearchIGive for WPI

I'll make a thread on the XMRV page too -- maybe more people will see it.
 
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_Kim_

Guest
Harley Davidson Raffle

Andrea posted this press release yesterday (though it was dated Oct 2nd, it isn't on the WPI website). If you'd like to buy a ticket, call WPI on Monday at 775-348-2335.

[Someone on the WPI facebook page suggested that the winner could do even more by turning around and selling the motorcycle on Ebay and then donating those profits back to WPI.]



FOR IMMEDIATE RELEASE

Oct. 2, 2009

Contact:
Angelina Wyss Gordon
Director of Development
775-722-1215
angelinawg@wpinstitute.org

Frankie Vigil
R&R Partners
775-336-4555
Frankie.vigil@rrpartners.com

WIN A 95TH ANNIVERSARY EDITION HARLEY-DAVIDSON ULTRA GLIDE

Proceeds benefit the Whittemore Peterson Institute for Neuro-Immune Disease

Reno, Nev. – The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) is raffling off a 95th Anniversary Edition 1998 Harley-Davidson Ultra Glide to one lucky ticket holder. This beautiful and collectable Harley can be yours by purchasing a $100 raffle ticket and only 500 tickets will be sold. The raffle will end on Dec. 11, 2009 or when 500 tickets have been sold, whichever occurs first. If you are interested in purchasing a raffle ticket please visit www.wpinstitute.org or call 775-348-2335.

This unique raffle opportunity will directly benefit WPI and their mission to help find treatment options for those suffering from ME/CFS. The anniversary edition Harley has only 300 miles and every available option sold for its class. Purchased brand new at Reno Harley-Davidson, this high-end touring bike is ready to take you on memorable road trips, or be a part of any great Harley collection. Don’t miss this one-time opportunity to win the bike of your dreams.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe systemic, acquired illness that can be debilitating. Although the Center for Disease Control has predicted that between 1 and 4 million Americans suffer from CFS/ME, almost ninety percent of those patients are without a correct diagnosis or effective medical care.

With community support, WPI scientists and doctors will continue their vital research to advance discovery of the causes of neuro-immune diseases, identify diagnostic biomarkers, and develop effective patient treatments and critical prevention strategies, for patients affected by neuro-immune diseases.

To purchase a raffle ticket and to learn more about the contest rules, please visit www.wpinstitute.org.
 

Cort

Phoenix Rising Founder
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I asked Dr. Peterson if federal dollars were flooding into the Whittemore Peterson Institute after the big discovery and he said no. They did get a nice grant for $330,000 a year for several years but it was not to study XMRV.

They do have several grant applications in the pipeline and one hopes that in this environment they'll actually get funded but except for patient contributions which can only go so far in such an expensive field it sounds like the WPI at least at this point is functioning much as it did before - on approximately $1 million a year budget - which I imagine is heavily subsidized by the Whittemore's.

One really significant source of funding will be XMRV test they licensed to VIPdx. The Feds are very important - thats where the medical research money really is; it's really hard to run a significant research Institute without having lots of federal funding - there's really no substitute for that.
 
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SDD1244

Guest

When my parent's asked me what I want for Christmas this year, I told them that the most important thing that they could do for me is to donate to these organizations (in particular... the Whittemore Peterson Institute) that are fighting for me. I plan on telling my friends and other relatives the same thing.
 

alice1

Senior Member
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The WPI will recieving a-lot of money from Reno,Nevada and you can bet the Pharmaceutical companies.I think sending a token gesture is great but a letter to the Government or Senate would be more advantageous as it's not the Institute that needs to believe it's the rest of the world.
 
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Well

Well, I disagree.

The rest of the world will believe when the study results show what it is. And WPI is doing those studies now.

The investment in WPI has paid off. The investment in government has not. A letter to government won't hurt and only costs 42 cents. But I think we should put the money where we know we are more likely to see a return.

Tina
 

alice1

Senior Member
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I can certainly understand your point Well and contributing any amount to the Whittemore is a great message.I really meant to say that sending letters to the big money agencies (government) would be extremely beneficial as Cort wrote that's where the big funding is.
 
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I think

Letters can't hurt.

But I don't put hope in that. The government will jump on board as followers. WPI and other private researchers are leading the way.

I would imagine that many other private research labs are looking into the XMRV now also. So while big money is in government, I believe much of the answers will come from private labs. The government will come in and do follow up. It was theirs to have, but they blew it. So let's do both. But my hope is in the private, WPI and the many others now interested.

(Although, to be fair, WPI also had some state funding.)

Tina
 
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Letters can't hurt.

But I don't put hope in that. The government will jump on board as followers. WPI and other private researchers are leading the way.

I would imagine that many other private research labs are looking into the XMRV now also. So while big money is in government, I believe much of the answers will come from private labs. The government will come in and do follow up. It was theirs to have, but they blew it. So let's do both. But my hope is in the private, WPI and the many others now interested.

(Although, to be fair, WPI also had some state funding.)

Tina
It all helps for sure, but given the way government has messed this up it sure would be nice to just provide evidence that can't be ignored to force resolution.

I think the government is trying to ignore CFS and just hoping it will go away, they have to know very well how prevalent XAND is.

I also believe that special interests like health care companies and policitians could be working against us like they have in health care. Joe leberman is a great example of a politician bought and paid for. I'm sure the same may hold true for the CDC.

Getting to private funding rolling, and forcing the issue like WPI is doing, will make it impossible for the governement to ignore, or will go right around them completely to get it solved.
 
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Pocket Change Campaign

This was put together with help from Dan Morcoli and folks on the ME-CFSCommunity board. Our U.S. rep Ms. Bauer was at both of the last CFSACs. I'd say it's legit. I'd say it's awesome that you've got these heavy hitters coming together on their own - Kerr, Klimas, Gow, and now Enlander steps out the closet. Obviously, 4 years on CFSAC didn't cut it for Dr. Batemann either, who runs her O.F.F.E.R. clinic in Utah.

The only hitch is we don't and they don't know what direction the money will take - probably multiple directions. Why it's independent of CAA and WPI, I'm not sure. We now have at least three cash-starved groups now. Did Washington get the message when WPI was on the hill this month? 'Doesn't sound like it - at least, like Hillary Johnson said, they may not be concerned about us as much as the blood supply. Then again, it's hard to say, since the president's health bill is number one and the time for signing that is just around the corner, so our fiscal timing isn't the greatest.
 
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kristin

Guest
There are other things we can do as well. My daughter has organized a fundraising event in January with the proceeds going to WPI. It's great not only because of the donations but raising awareness about ME/CFS with the general public.
 
K

kristin

Guest
Warbler512 Read the guidelines for Pocket Change again.

"How will the money be spent? By the very people who know the most about the most promising research initiatives in the world.

Every dollar raised by the ME/CFS Research Fund will be distributed by our Scientific Committee. A world renown group of the leading scientists in the study of ME/CFS consisting of Dr. Jonathan Kerr of The United Kingdom, Dr. Nancy Klimas, of the United States, Dr. John Gow of Scotland, Dr. Lucinda Bateman of the United States and Dr. Derek Enlander of Northern Ireland.

Each member of our scientific committee has graciously donated their time to this desperately needed campaign and serves without compensation. Every six months they will decide on the research projects to be supported by the fund. There are, however, strict limitations on the amount of funding they can give to their own projects. For more information, click HERE.

Allocations made by the scientific committee will be reported herein along with periodic updates on each funded project's respective progress."


I trust that the scientific committee will choose very thoughtfully when deciding who has the most promising research initiatives and is in the most need for funding.
 
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Another group

And now we have another group. I wish we had a strong leader in research that all can rally around. There's WPI, IACFSME, CDC, NIH and CAA. I hate that the list of anachronisms leads to a dilution of the impact of the funding to each of them. How much more could be done if all of this was under one umbrella?

But this is the land of democracy where if you don't agree, then you spearhead an effort to make things change based on what you believe. If ever there is an argument for a need for a strong leadership role of the government, this is it. But absent that....... we divide and take our money with us.

Well, I guess the choice is good too. Your not stuck with just one place to put your money, even if you disagree, if you don't like one you can support the other. In time, some will dissolve.

It may take more time than a united effort would, but I think, the answers will come and be more sure as they come from many voices, not just one.

Tina