posted
If you had one-half million dollars to donate to Lyme Research, who would you give it to, or divy it up between? Thank you sincerely, *Bit*
Posts: 116 | From Bisbee, AZ USA | Registered: Sep 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Bugbit..
Oh fun!
Nice to ponder THIS topic for sure. But if it is a serious question.. oh how difficult it would be to decide!
Let's see...
If it were MY money to donate... I would give it to an organization big enough to handle it.. due to regulations, tax-exempt stuff, etc. I would also give it to one that is non-profit. And one with stability and a good record of using funds in the best way possible. I have checked out several groups in the past 6 months or so.
I think the Lyme Disease Association would be my choice of places. Others have asked me about this type of thing before... and in my will (which I am updating as we speak) I needed to consider the same thing... so I've looked into it closely.
I know they do and have done a lot of donating to research projects that I would approve of and be satisfied with... and the outcomes often benefit "our side".
I know a huge part goes toward Lyme stuff directly because they are an all volunteer group.. and not toward other expenses that they could spend it on such as excessive amounts of office expenses, travel allowances, salaries, etc. I think it was that 97 percent was used directly for Lyme stuff from the money they get.. but don't quote me on that figure. It was 90 something anyhow.
BUT.. I would earmark it to be used specifically for the following:
1/5 to be used for research for the children's benefit. This is an area where not much if anything has been done.. other than dipstick stupid stuff by the Bumsteere gang. We must help the children. ````````````````````````````````````````````````
1/5 would be used for projects in individual states, by established advocates or groups who deal first hand with the problems they are fighting. For example ONLY... I KNOW the biting flies and possibly mosquitoes, etc are carrying/passing TBD's to humans in our state.. but I can't prove it because I can't afford the testing.
I have the bugs, the agreement from a lab to test them, etc.. but no way to pay for tests. If I am right... it would help bring Lyme and TBD's out of their "closet" and make others with more money take note and DO something about it... as well as open the eyes of the public so they can scream and roar at the right people to get help.
Plus.. individual volunteer groups or advocates usually have no source of income and most leaders and those who CARE about Lyme are too sick to do much fund raising... so most of what they do for projects comes out of their pockets. If they can't afford it.. no matter how good it is.. it can't be done. And they would not be wasteful and would treat it as if it were their own money they were spending... because that is all they have ever had.
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1/5 to go to IGenex Lab for their doctors (who I've met and approve of) to work on improving tests, biopsies, etc for patients. They have been doing this specific research the longest.. have an excellent staff.. are dedicated to the cause and have given back so much to the Lyme community already. I've followed some of their research projects on/off over the years and I think they do a good job.
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1/5 to be given to the Lyme Disease Association's ongoing efforts to continue their work... to use for research projects as they deem necessary without any specifications attached.
For example ONLY- There are many states that are not considered to have a big Lyme problem. If Mississippi folks need to prove their ticks DO have Lyme, etc.. it is nearly impossible to get government funds for that purpose. The officials figure no problems, no funding... and it is a vicious circle.
If Ms. Mississippi needed to prove dogs have Lyme to get the attention of others to start some funding.. that would be a good project that could help but doesn't fall under the above catagories.
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1/5 to be given to The Memorial Park Project which will have an extensive library for researchers, patients and doctors where conferences can be held, research can be done, and Lyme families of those who passed and those who visit will be able to see there is progress being made, etc. A central "hub" of activity.
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OK.. back to the real world.. but that was fun and good for me as it made me bring my thoughts together. Thanks bugbit!
posted
bugbit; outstanding question, and i too would love to know how YOU would spend those very precious $$$ for the betterment of the entire chronic lyme community nationwide.
tincup, wonderful examples you gave above! you really had to do some soul searching for those answers.
i went thru this in march 07 updating our wills before my hip replacemet surgery.
i'll share how i split it up for charities;
chronic lyme research center at columbia university;
lyme disease assn. education; example keeping lymenet going, etc.; brochures, etc.
LDA for ADULT fund for getting treatments for those who can't pay; named after me
now, you mentioned research; so only 1 of my things go towards that.
tincup mentioned a really good one; making sure the money goes to RESEARCH, ETC. INSTEAD OF MANAGEMENT/FUNDRAISING COSTS!! ******************************
another possibility i'd like to mention is to ILADS .... those LLMDS DOING LYME RESEARCH ON THEIR OWN, ETC. i read where 1 of our llmds went to PT vs. full-time and rest of time is doing research!
yes, memorial project would be a good cause too ... library of lyme books, etc.
gee, i see not many have read your post in spending your money!
iowa's powerball is somewhere around $200 million; didn't hear latest!
i hope DOC DAVE sees this post; i know he'll have some ideas!!
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posted
Unfortunately a half million would not go far for Lyme research, but it's a great start!
I would donate it to a premier LL pathologist who is interested in proving the pathophysiological consequences of undertreated yet persistent chronic Lyme disease through scientific autopsy in a controlled study.
The evidence is there (in our brains and bodies) that persitent Lyme exists despite antibiotics and that we are dying as a result! Posts: 339 | From nowhere | Registered: May 2007
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posted
I'd also consider ILADS. They fund research too (like Alan MacDonald's research on Lyme and Alzheimer's! speaking of LL pathologists), and train new doctors.
Posts: 621 | From US | Registered: Jun 2006
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