posted
Hi folks, With the holiday season and the end of the year coming up, we all have a great opportunity to help finally find a cure for Lyme disease.
The Research Center in Chronic Lyme disease at Columbia University is very close to having enough money to open its doors.
This would get scientists at a major institution focused on answering questions about chronic Lyme disease. They could also network with scientists in other areas of Columbia who see patients with ALS, alzheimers, etc to share knowledge of diseases which may have similar symptoms..
Additionally, the very existence of such a Center would give Lyme disease patients a legitimacy we do not now have. When they try telling us that chronic Lyme is not a serious illness, we would have the backing of one of the most prestigious medical centers to show that we are "real."
The Lyme Disease Association and Time for Lyme in Connecticut have raised approximately three quarters of the three million dollars necessary to get the center started.
If all of us take an active part in the next couple of weeks, we can help get the center up and running soon.
There are two ways to do this:
1) Write a letter to your friends and family explaining that their contributions to the LDA can help open a center to do research into the terrible illness from which you have suffered. Many people make their charitable donations at the end of the year, so writing to your circle right now could make a big difference.
2) Ask anyone who might be giving you a Christmas present to make a contribution to the LDA in your honor instead.
Checks should be made out to: Lyme Disease Association, Inc., P. O. Box 1438, Jackson, NJ 08527 PLEASE WRITE 'COLUMBIA CENTER' IN THE MEMO SECTION OF THE CHECK, or you may contribute for education projects or general research, if you prefer.
Thanks all, Ellen
[ 02. January 2006, 08:59 PM: Message edited by: Lou B ]
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Posts: 819 | From New York, NY | Registered: Oct 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Great IdeaI asked my family to make a donation in my name.I hope someone does.
Untill this research center is up and running I don't see any big research projects ahead.
This would make a HUGE difference > Having a whole research center devoted to chronic lyme. I think this would be the first one in the world?
I have all my hopes pinned on this center.
Thank you thank you thank you for this post it !!gives me much hope!!!
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Don't want to be cynical but I don't believe they'll find a cure.
A cure will be found by a startup or by innovative cross fertilization of thinking by different scientists.
Academic medicine grinds exceedingly slow.
I'm happy they have a center but basically it will be to establish the validity of chronic lyme and the helpfulness of aggressive long term abx therapy.
But not a cure.
Posts: 2276 | From united states | Registered: Jun 2004
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WildCondor
Unregistered
posted
Thank you Ellen!
I sent in my donation today, and thank you for posting this. I have asked friends and family to do the same. A cure will be found, and we have to be optimistic. Hard work, research and determination will see us through. Thank you Ellen!
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Folks, this is VERY important! While we all hope for a "cure" and are realistic about the possibility, this center will also make an equally significant statement.
Having the 1st Lyme research center at a reknown academic hospital will make a HUGE statement in the medical establishment. It will also help thwart the credibility issue and dubious opinions that many LLMDs face when they publish research. We need to get this center up and running ASAP. Help if you can. I did and it was my pleasure.
posted
Thanks for your responses. This is really an important post to keep on the front page.
The two things that are now in process are the Columbia Center and the federal bill to fund research.
The federal bill will take a lot of work and pressuring politicians. and it's really important.
But the Columbia Research Center is something that we know will happen. And we can get it to happen much sooner if we start getting our friends and relatives to contribute. Ellen BTW, the contributions wil be tax deductible.
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Posts: 819 | From New York, NY | Registered: Oct 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
They will find a cure.
Having the research center is a huge step towards finding a cure.
I think one of the biggest problems holding back progress is the apathy from the CDC and the medical community,and all the dam politics invloved.
Having a research center, if nothing else says to all those invloved in perpetuating mis information that lyme is hard to get and easily cured that they are wrong.And that this is truly a serious disease that needs serious study.
If I hit the lottery tommorow I would give every penny to it.We need this center built ASAP!!Yesterday.
I know to the core of my being there will be a cure.Dido condor:"Hard work,research and determination will see us through"
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Getting the Research Center started as soon as possible will greatly improve the way we are viewed.
We are constantly on the defensive now. It would be nice to be able to have the automatic recognition that a research center in Chronic Lyme at COlumbia would give us. Ellen
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Posts: 819 | From New York, NY | Registered: Oct 2001
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JimBoB
Unregistered
posted
ellenluba and henson2: WHAT does UP or up mean?
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi Cave
I'm not sure if this is what you were asking -- if you see Ellen's first post of this thread (follow this thread up), she gives instructions for how to earmark any donation you make for the Research Center itself.
That way you know that your donation goes to the Research Center specifically.
Thanks for asking! Posts: 1066 | From East Coast | Registered: Dec 2000
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bettyg
Unregistered
posted
I missed this post earlier, so glad to read it now....very timely!
Thanks Ellen for all the wonderful, useful info!
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
It does state the type of work they will be doing at the research center.
The Research Center in Chronic Lyme disease at Columbia University is very close to have enough money to open its doors.
Lyme Disease Assn. & Time for Lyme in Connecticut have raised $1.3 million of the $3 million necessary to get the center started. It will be the FIRST in the WORLD devoted to chronic lyme disease...exciting to me, and hoping for a remission for myself/others.
Dr. Brian Fallon, MD, Columbia University, will be involved, and contributed so much to the understanding of lyme disease and how it affects the brain.
I composed my own letter and sent to family/friends of this exciting new chronic lyme research center so they could forward to others they know with lyme!
Thanks for your help gang.
ELLEN, I did notice a huge discrepancy from the LDA site I posted above. LDA shows $1.3 million and your initial post shows about 75% raised. WHICH IS CORRECT? Thanks for posting reply for us all.
Happy new year filled with remission for us all!
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
UP.....
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
Ellen, Thanks for the heads up on this. We agreed with our siblings this year that we would donate in lieu of gifts. Because of your timely reminder, we sent a donation requesting that it be used for the research center. The center will definitely legitimize this disease. Whether cure is the ultimate result, there is MUCH to be gained from establishing this center!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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bettyg
Unregistered
posted
Thank you both for referring me to Pat Smith.
Somewhere along the line, she received my note, and sent me a private message yesterday. I sent info to Pat then, and am waiting on answers to several questions I brought up.
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bettyg
Unregistered
posted
Here is a copy/paste of what Pat Smith sent me today. NOTE: Betty underlined important parts to herself as well as breaking up some longer paragraphs so she could read.
"Thanking you in advance for the donation you indicated in email you have sent. We will certainly put it to good use.
As you know we are an ALL volunteer organization so very little monies are spent on overhead since we have no salaries and no office overhead.
Although we do try to keep the website up to date so much is happening it is impossible for website ever to be completely up to date.
As for the Columbia center, LDA/TFL have raised about 3/4 of the 3M. The monies are always given within legal agreements so that we ensure the monies are used for the Center.
There is almost always a lag between how much has already been given to Columbia and how much we have raised toward the center that will be given.
As a matter of fact, LDA just gave another chunk of monies at year's end. Some of the monies toward the center are also in a current projects fund, so that they are actually doing Lyme research before the center is technically opened.
In the new year, we will be working on upgrading the current legal agreements governing the center opening. Fortunately, LDA has a wonderful pro bono counsel in NYC who advises us every step of the way.
Hope that helps. Have a happy new year.
Now! See Authors Amy Tan, Meg Cabot, Jordan Fisher Smith discussing their personal Lyme disease experiences in LDA's Literati with Lyme video View online at www.LymeDiseaseAssociation.org
Pat Smith, President Lyme Disease Association, Inc. PO Box 1438 Jackson, NJ 08527 888-366-6611 information line 732 938-7215 fax www.LymeDiseaseAssociation.org"
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bettyg
Unregistered
posted
Could the moderators put this up at the top of this board, medcal, below treepatrol's newbie links since it concerns CHRONIC LYME RESEARCH CENTER AT COLUMBIA UNIVERSITY, NY...only one in wrld!
Thank you for making this a permanent feature like Treepatrol's newbie links! It's too important for ALL chronc lyme patients to know about and help with funding thru family/friends.
Thank you so much for changing the title to a more specific one; now others can do a search on CHRONIC LYME RESEARCH CENTER AT COLUMBIA UNIVERSITY, and find info galore of what has been discussed!
posted
Betty. Thanks for writing to Pat and clarifying those issues.
Sorry I've been layiing down on the job.
Please, everyone, remember to write "Columbia Research Center" on the memo section of the check. Ellwn
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Posts: 819 | From New York, NY | Registered: Oct 2001
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bettyg
Unregistered
posted
Ellen, you are most welcome!
Pat responded to me in a very timely manner, and the other links our lymenet members above showed, were helpful to me too.
I hope you didn't mind me asking Lou to change your subject title so it was very specific to this very important topic in our lives .... chronic lyme research center at Columbia Univ., NY! Now it won't get buried & we won't have to keep bumping it to the top for newbies/oldies.
Happy new year to all of you; may this be the year of REMISSION for us all! I can dream, can't I? LOL.
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posted
i nearly went to new york for tests but it cost 3,250$.thae columbia peole do notknow how to cure it,but they do think iv abx helps to correct brain damage from lymes.
Posts: 32 | From northern ca. | Registered: Mar 2005
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posted
Hi Ellen, Sounds like a great start to the New Year. My check is in the mail and I emailed 20 friends.
DawnE
Posts: 158 | From Great Neck, New York | Registered: Sep 2002
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bettyg
Unregistered
posted
I received a most unexpected SURPRISE reply letter in the mail yesterday from Marissa Battilana, director of the Letters for Lyme, LDA!
She wrote on a card thanking me for my 1-time large, generous donation for the chronic lyme research center. (Since I represented myself at my 2nd ALJ, SS disability insurance hearing and WON after 5 years, I donated a portion of the money the lawyer would have gotten.)
I sure wasn't expecting anything like that.
Marissa, I don't know if you come on here or not, but here's a question for you. If she doesn't, I'll copy/paste this to a private email for her since she enclosed a card w/info.
I noticed 1 of the things to be done there are AUTOPSIES. I'd like info on that as I want to donate my brain so Dr. Fallon, etc. can LEARN from my chronic lyme brain of 36+ years.
What paperwork would be involved?
What would the procedure be locally to "fly" my brain out to east coast.
When I die, I'm going to designate any memorial money to be sent to the lyme research center. I don't want anyone else to go thru the hell I've been thru all these years. Thank you.
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posted
Hi,the senator was just on channel 12 Westcheaster NY. news last week saying he wants government funding for Lymes.Why doesn't someone contact his office his number is 914 285 9741... or write him at
Senator Schumer 313 Heart Senator office Building Washington,DC.20510
and thank him also for his awareness to researching Lymes further.
quote:Originally posted by oxygenbabe: Don't want to be cynical but I don't believe they'll find a cure.
yes a cure in United States the land of greed and pills and stock.I can only hope but who knows.
their is something that helps Crohn's disease antibiotics a Dr.B***** in Australia found out it responds to triple dose of rifabutin,clarythromycin,clofazamine...
these meds have helped a women get her life back.( in Newsday NEWSPAPER LI.NY. TUESDAY mAY 16,06 stay away from too much beef, dairy and sugar
-------------------- Doctors do not know it all huge ego's too Posts: 3 | From NY | Registered: Jun 2006
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posted
WELL WHAT IS UP WITH THIS POST? iS IT OPENED YET, THEY COULD HAVE MADE THE REST THEY NEEDED IN INTREST BY NOW..........
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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