posted
I have seen a lot of discussion of late regarding soliciting the Bill and Melinda Gates Foundation for funding for Lyme research.
Through a college classmate, I was able to communicate a request for help in funding for Columbia. I received the following reply which I am posting with permission:
<< Hello Ms. Shaps,
[Classmate's name deleted] shared your inquiry regarding Lyme Disease with the Infectious Diseases division of the Global Health Program. Lyme disease is currently not within our global health strategy. However, your inquiry was discussed at [classmate's name's] request.
It has been determined that the proposed activities are not among the current priorities for support by the Bill & Melinda Gates Foundation. In order to stay focused on our highest priorities, we must unfortunately decline funding for many worthwhile projects.
Sincerely,
Peter Berry Program Coordinator, Infectious Diseases Global Health Program BILL & MELINDA GATES foundation >>
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
Not really. I know we think we are the center of the universe, but there are many (many) health problems worldwide that need to be addressed, and no single foundation can focus on/fund them all.
<< The foundation's global health mission is to help ensure that lifesaving advances in health are created and shared with those who need them most.
We focus on accelerating access to existing vaccines, drugs, and other tools to fight diseases that disproportionately affect developing countries, and we support research to discover new health solutions that are effective, affordable, and practical for use in poor countries. >>
This is their mission. Their focus is on developing countries with very high poverty rates who probably have no alternative.
The US is a wealthy country. We have alternatives. We just need to keep looking until we find at least one.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
Looks like there are over 9,000 members here, I wonder what would happen if Mr Peter Berry
recieved a couple thousand letters from us lymies asking for help with lyme research andd awarness?
Just A Thought, Later Bruce
-------------------- CFS for 20 Years then found LYME the root cause! Am dealing with several viruses also. Posts: 89 | From Alliance Ne | Registered: May 2006
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posted
The reason that I posted his response (with his permission) is because I have seen discussion here about contacting the Gates Foundation and wanted to let everyone know that this is not consistent with their mission. I posted to save people time.
There are other resources. I believe that your time will be better spent if you move on to them.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I am glad somebody gave it a shot and that a clear, straightforward answer was given.
I would guess thanks were sent back.
I believe the Gateses are trying to approach the huge picture as regards US high schools graduating people un-prepared for life, let alone college, AIDS and Malaria, among others.
posted
>> I believe the Gateses are trying to approach the huge picture as regards US high schools graduating people un-prepared for life, let alone college, AIDS and Malaria, among others.
As I read the mission statement, the Gates Foundation is not focused on anything in the US. We are a wealthy country and have the resources to solve our own problems, if properly focused and applied.
Instead, they are focused on countries who do not have the financial or other resources to solve their own problems, no matter how hard they might try.
To which I say kudos to them.
Yes, I did thank Mr. Berry for his consideration. As I explained above, I have posted this message so that time is not wasted pursuing the Gates Foundation when that time and energy could be better used looking elsewhere, and so as not to waste Mr. Berry's time dealing with numerous inquiries from different sources.
Please do not write to him. This door is closed. Try to find an open door to go through, or open a door that is already partially open.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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Be Positive! Many of us here haven't made it through (literally) decades of misdiagnosEs without proving how resilent we are & how strong our Spirits are!
The Gateses are wonderfully generous, but their causes help the MASSES...Lyme Disease IS a pandemic...only thing is, THE WORLD DOESN'T KNOW IT YET!
Onto another avenue...
Sweet Dreams~~Reno
-------------------- ~Life's too short, eat dessert first Posts: 134 | From PA | Registered: May 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
Suzanne, thank for the "johnny on the spot" news even if it wasn't favorable to our cause!
Thanks for writing them earlier, and getting permission to post this here.
I'll try to email the lady, Alexis, earlier and tell her to FORGET THE IDEA. I'll try to find my post about that on someone else's post.
Yes, another door can open.
HAS ANYONE TRIED STEVEN SPIELBERG before? I have a classmate with a direct link to him.
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi everybody,
It is too bad that the Gates' at this point do not feel they should get involved with lyme.
Another thanks to Suzanne for pursuing in an intellegent, professional manner.
I am grateful that the Gate's are doing what they can for the starving kids and others suffering in Africa. They have been on my mind a lot during Babesia herxes. I keep changing my clothes that are moist with sweat and think what it must be to have maleria and no change of clothes.
I agree that we need to put our heads together and ask others for help.
I am glad we can communicate here to let each other know who has already been asked.
And of course, it is the distinctly possibe that we can wear down those who are in a position to help with repeated requests. Like the persistant widow in the Bible. She convinced a man who neither feared God or cared about men to grant her justice by refusing to let up.
I just read in the newspaper that the number of new millionaires in US is increasing every year. Tens of thousands at least.
I do believe that people care and want to give-we have to find them.
www.LymeLeague.com"Together We Grow Stronger" Posts: 139 | From A tiny little home office in the middle of Wisconsin | Registered: Feb 2005
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posted
I figure there are a lot of people/foundations that could help but aren't, and maybe won't until they are personally affected. The problem is that when rich and powerful people go to the doctor with symptoms from a tickbite, they are NOT brushed off, but given immediate treatment. At least that is my explanation for the lack of such people among the chronic ranks.
Yes, maybe the open eye film will be a good door opener for us, if they get the funding to finish it.
Posts: 8430 | From Not available | Registered: Oct 2000
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Lou,
Have you ever read Amy Tan's story? She spent years searching for a diagnosis. I don't think the rich and powerful get treatment and not lyme. I think they suffer like us.
I'm not rich and powerful, but my mother had connections to the "best" doctors in NYC when I was first sick. One measured me with a measuring tape and said one leg was longer than the other.
The reason more rich and powerful are not outspoken with Lyme is because many with Lyme probably don't know they have Lyme. And many of those who do have Lyme are scared to come out publicly and say so.
It took Michael J. Fox years to come out publicly that he had Parkinson's. On Inside the Actor's Studio, he said the reason he came public was because he couldn't hide it on the set anymore. He is doing amazing things, but his first instinct was to hide the illness.
I think the rich and powerful are impacted by Lyme. We just need to get them talking about it.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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bettyg
Unregistered
posted
PJ, THANKS SO MUCH; you provided the link for UNDER OUR SKIN lyme movie being made.
I needed that info for the links I'm compiling to send in my email letter to Steven Spielberg thru my contact.
Now to start working on my letter itself.... Thanks PJ; you saved me a lot of TIME! So did many of the other folks posting about Dr. J in Conn; I used those links and links from those specific sights especially the one showing the photo of Dr. J....
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David Letterman had Lyme. He did a show on it...I wish he would've taken it further!
I'm listening to Retro '80's...Bon Jovi summed up we, Lymies lives perfectky..."Ya' live for the fight, when that's all that ya' got!" Did you see the repeat of him on Oprah?
Sexy AND generous! Toooo Much... When I'm done moving, I AM going to write.
~~Reno
-------------------- ~Life's too short, eat dessert first Posts: 134 | From PA | Registered: May 2005
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I would tend to disagree with you -- the rich and powerful do get better medical care and probably have an increased probability of being diagnosed. They don't have to argue with insurance companies over treatment once they are diagnosed either. Of course it helps if you live in an endemic area.
Have you read how Michael J Fox was diagnosed with Parkinson's? How many people do you know that simply had a twitch in their pinky finger would be able to call up a neurologist or maybe it was a neurosurgeon and schedule an appointment ASAP?
Hubby has been to many ACAM (American College for Advancement in Medicine) doctors. These docs charge by the hour just like lawyers. They will keep testing and keep seeing you as long as you can pay. Most of them use "out-of-network" labs and test for things most general M.D.'s wouldn't even think of.
And if you are really rich or a top level corporate exec there are even more specialized docs who offer "concierge" medical care -- they make house calls even on weekends and holidays. Hubby read about this in his financial planning magazine.
In my opinion, Amy Tan had 3 strikes against her in her search for a diagnosis -- she is Oriental, she lived in California and she was a woman. Actually being a novelist could be considered a 4th strike by some M.D.'s.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Just watched The World News Tonight. Warren Buffet just gave the Gates Foundation 37 billion more dollars this week. Maybe it is worth another try? More money to go around.
Posts: 263 | From Georgia | Registered: Feb 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
Why not try again, billions of dollars just sitting there.....so now they can RETHINK the charities.
I volunteer if anyone will give me the contact information to do this for the Gates Foundation, to send a good letter, my book and my web site info to BEG BEG BEG them to reconsider Lyme....maybe I'll send them a copy of Lab 257 also...hmm now there's a thought.
Any takers?
-------------------- PJ
www.LymeLeague.com"Together We Grow Stronger" Posts: 139 | From A tiny little home office in the middle of Wisconsin | Registered: Feb 2005
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posted
It might be worth making sure that the Gates foundation grasps that Lyme is a huge problem worldwide, not just a domestic issue.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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posted
Char, I've also been thinking about the malaria - babesia connection and whether that would be a way to interest Gates.
I'm also wondering about whether we could contact Buffet, since conributing 30 billion should give him some say in how the money is used. Any idea how to get through to him.
Suzanne, it's really great that you looked into this.
THirty billion extra bucks to throw around - they could throw a couple of million our way. We should send the guy from the Gates Foundation pictures of Lyme kids before treatment. Ellen
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Posts: 819 | From New York, NY | Registered: Oct 2001
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posted
I agree that rich people get treated sooner and better than the rest of us.
So don't rule out the possibility that some of the people involved in foundations like this have had brushes with Lyme which were "easy to diagnose and easy to cure."
So when we do write, we HAVE to emphasize that Lyme CAN be a short term , not very serious illness, but that there are hundreds of thousands of us who have had their lives destroyed by a long term , much more serious version of this illness. Ellen
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Posts: 819 | From New York, NY | Registered: Oct 2001
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posted
I'm excited about writing to the Gates Foundation, but , you know, I know a more sure fire thing we can do to get 100 million dollars for Lyme research.
We have a bill in Congress now (HR3427 in the House and S1479 in the Senate) that wuold give us 100 million dollars for Lyme disease if we could get it passed.
There are now 70 Congresspeople and 16 Senators co-sponsoring these bills.
If we could all get to work and write to our legislators, we could get this bill passed!!
So after you write to the Gates Foundation, go to http://www.lymediseaseassociation.org/SupportFederalBills.html and check out the bill and ask your Congressperson and Senator to sign on . The website gives you information on how to contact them. Ellen
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Posts: 819 | From New York, NY | Registered: Oct 2001
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bettyg
Unregistered
posted
check out the BOTTOM LINE of co-sponsors link by Ellen; I missed it & took awhile to find it on my own!
IOWANS: Our 2 Iowa Senators have NOT supported the S 1479 version; please email Tom Harkin & Chuck Grassley to support the bill. I have many times since it started.
Iowa Rep. Tom BOSLEY is CO-SPONSOR of R bill. Bettyg ...1st name s wrong; can't think right now.
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posted
I just threw in the link about the bill as an extra added important thing to do .
BUt the idea of writing to the Gates Foundation is terrific. I don't want to distract from this thread's dedication to doing that. Ellen
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Posts: 819 | From New York, NY | Registered: Oct 2001
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Bea,
I wasn't saying the rich and powerful don't get better medical treatment. They do.
But Lyme falls out of the traditional good/bad medical treatment. The rich and powerful are more likely to see prestigious doctors, who seem to be less likely to believe in long-term lyme.
If they do the research on their own, yes the more money a person has the more likely they can pay for Igenix tests or visit LLMDs who don't take insurance. But they need to know about Lyme first.
I really did have access to some of the best doctors. I have family involved in the medical community with very presigous institutions and doctors. None of that helped. What helped was my own internet searching and contacting my local lyme support group.
I do recognize that money does play a role. There are people who can't afford to see an LLMD. There are people who can't afford or don't have the education to learn on their own. But that's a different separation than rich and powerful versus the rest of us. I think that's the higher middle class and higher populations versus middle class and lower population.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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