readyforlife
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Help with raising funds for Prof. Lipkin's study
- Thread starter vli
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No--his reply was those 3 lines long!!! like i said i'll wait to see if i hear anything more next week (which i doubt) and i'll call his office by Fri. to see if his staff can help.
Andrew
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I hope they understand how helpful it would be to know how much they need. With this we can make the fund raiser an event with a goal to reach.
OK I just got a reply from the Director of Development, Major Gifts at Columbia:
"Dr. Lipkin forwarded your email to me. I am getting a dedicated account and website giving vehicle opened specifically for Chronic Fatigue Syndrome at the Center for Infection and Immunity. I will let you know when this is up and running.
I will let you know what the monetary goal is and will work with you and your group on fundraising for chronic fatigue syndrome to achieve this goal.
Please feel free to contact me if you have any questions."
Edit: I have written back again and was told in the reply that this account should be set up by next week which is good.
"Dr. Lipkin forwarded your email to me. I am getting a dedicated account and website giving vehicle opened specifically for Chronic Fatigue Syndrome at the Center for Infection and Immunity. I will let you know when this is up and running.
I will let you know what the monetary goal is and will work with you and your group on fundraising for chronic fatigue syndrome to achieve this goal.
Please feel free to contact me if you have any questions."
Edit: I have written back again and was told in the reply that this account should be set up by next week which is good.
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Firestormm
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vli if you can make an article out of this - perhaps referring to the research the team are engaged in and what the funds will be used for - let me know and we can publish on the Home page etc. with links to the fundrasing website.
Nice going
hi @Firestormm , I'll be sure to do that, once I hear anything from them by next week as to whether the dedicated account and website have been set up. thank you!
Andrew
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This is the kind of response we like to see.
alright guys, I just got the following update from Columbia:
I am happy to report that the link has been changed so donations can now be allocated directly to the CFS pathogen study. (see below)
You had asked if there was a specific crowd funding mechanism that we would accept. We do not have one but are open to suggestions.
https://giving.columbia.edu/giveonline/?schoolstyle=5881&alloc=12636
I look forward to hearing from you.
Best,
--Need I start a poll on what crowdfunding mechanism we wld like or can everyone simply state their preferences in a post? Should we go for Kickstarter too?
vli
I am happy to report that the link has been changed so donations can now be allocated directly to the CFS pathogen study. (see below)
You had asked if there was a specific crowd funding mechanism that we would accept. We do not have one but are open to suggestions.
https://giving.columbia.edu/giveonline/?schoolstyle=5881&alloc=12636
I look forward to hearing from you.
Best,
--Need I start a poll on what crowdfunding mechanism we wld like or can everyone simply state their preferences in a post? Should we go for Kickstarter too?
vli
heapsreal
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Wow i havent read this thread in awhile, great work vli.
heapsreal
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i wonder if its worth having a 'sticky' type thread with just the different organisations that people can donate to.
something along the top of the forum??
something along the top of the forum??
aimossy
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thanks for that info @vli and @heapsreal I like that idea with an add of information on what those organisations/researchers are working on.All in the one spot.
I had a weird dream one night of a web page where this sort of stuff all was and I was able to read through and choose to donate or not. Plus the page was like a place where all the really good stuff got onto and acted as a screen for stuff that was not quite so worthwhile. mental I know!
I had a weird dream one night of a web page where this sort of stuff all was and I was able to read through and choose to donate or not. Plus the page was like a place where all the really good stuff got onto and acted as a screen for stuff that was not quite so worthwhile. mental I know!
heapsreal
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thanks for that info @vli and @heapsreal I like that idea with an add of information on what those organisations/researchers are working on.All in the one spot.
I had a weird dream one night of a web page where this sort of stuff all was and I was able to read through and choose to donate or not. Plus the page was like a place where all the really good stuff got onto and acted as a screen for stuff that was not quite so worthwhile. mental I know!
if there was a cure, i think we would be lost for awhile, we would all have to get a life lol.
we should be dreaming about other things not cfs but its hard not too, lol.
Guys, I just got this from Columbia. Does anyone have ANY ideas as asked in my post above or even feel like taking over temporarily????? I am flying from Hong kong to california in THREE DAYS and I simply will not have time to deal with this issue for weeks to come. I'd be grateful if people'd just throw some ideas in the thread and I'll present them all to Columbia so the effort doesn't lose momentum.
"Dear
Just following up to see if you received this email from last week.
Best,
"
"Dear
Just following up to see if you received this email from last week.
Best,
"
Andrew
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The interface works. It would be nice to be able to use PayPal as it automatically provides name, address, etc. Maybe a way to like it on facebook. Other than that, it really needs some people who will post on this forum and and elsewhere trying to promote it.
btw, when I followed the link (above) it defaulted to Lipkin Lab. There is a second selection there for Chronic Fatigue Syndrome. I assume that's the one we use.
btw, when I followed the link (above) it defaulted to Lipkin Lab. There is a second selection there for Chronic Fatigue Syndrome. I assume that's the one we use.
Quick update:
1) I replied Columbia asking how much a crowdfunding effort should aim for
2) https://www.facebook.com/photo.php?fbid=3752446585254&set=a.1080389745503.9924.1699098505&type=1 so thanks to those who've donated so far
vli
1) I replied Columbia asking how much a crowdfunding effort should aim for
2) https://www.facebook.com/photo.php?fbid=3752446585254&set=a.1080389745503.9924.1699098505&type=1 so thanks to those who've donated so far
vli
Below is the latest correspondence from the Director of Development at Major Gifts at Columbia. I am way too tired (just flew in 2 days ago from Asia, cfs+jet lag!!!!!!!!!!!) to do this right now, but Columbia happens to respond at the worst possible time so *please*, if you have any interest in forwarding this info to anyone or again know anyone with fundraising experience who could help keep this project from losing momentum, I would be very grateful for any input or help.
Dear Vanessa,
As requested, below is the fundraising goal ($1M) as well as some information about the project. Let me know if this is helpful to you.
Best,
Fern
Chronic Fatigue Syndrome Initiative Pathogen Study at the Center for Infection & Immunity at Columbia University Mailman School of Public Health
Research into the human microbiome is an exciting new pathway to advance our understanding of the role that over a trillion microorganisms in our body play in health and in the development of disease. An altered microbiome may cause not only gastrointestinal problems but also immunological and brain dysfunction. As the world’s largest and most advanced academic center in microbe discovery, identification and diagnosis, the Center for Infection & Immunity at Columbia University is optimally positioned to embark upon the challenge to determine how bacteria, fungi, viruses and toxins (and the immune response to them) contribute to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME). Discoveries in these area may point us toward treatment strategies that reduce vulnerability through exclusion diets, probiotics or drugs.
The initial goal of this effort is $1 million. (my bold)
To make give a gift to CFS/ME research, please go to: https://giving.columbia.edu/giveonline/?schoolstyle=5881&alloc=12636and click the dropdown to Chronic Fatigue Syndrome Gift.
For additional information, contact:
Fern Schwartz
Director of Development, Major Gifts
--SO GUYS WE HAVE A TARGET. i don't know where to go from here whether to just launch a full blown kickstarter campaign like the CICM people did or what. i'm about to pass out here in my hotel room, so if anyone has any ideas as to how to next go forward please kindly throw them on here.
Dear Vanessa,
As requested, below is the fundraising goal ($1M) as well as some information about the project. Let me know if this is helpful to you.
Best,
Fern
Chronic Fatigue Syndrome Initiative Pathogen Study at the Center for Infection & Immunity at Columbia University Mailman School of Public Health
Research into the human microbiome is an exciting new pathway to advance our understanding of the role that over a trillion microorganisms in our body play in health and in the development of disease. An altered microbiome may cause not only gastrointestinal problems but also immunological and brain dysfunction. As the world’s largest and most advanced academic center in microbe discovery, identification and diagnosis, the Center for Infection & Immunity at Columbia University is optimally positioned to embark upon the challenge to determine how bacteria, fungi, viruses and toxins (and the immune response to them) contribute to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME). Discoveries in these area may point us toward treatment strategies that reduce vulnerability through exclusion diets, probiotics or drugs.
The initial goal of this effort is $1 million. (my bold)
To make give a gift to CFS/ME research, please go to: https://giving.columbia.edu/giveonline/?schoolstyle=5881&alloc=12636and click the dropdown to Chronic Fatigue Syndrome Gift.
For additional information, contact:
Fern Schwartz
Director of Development, Major Gifts
--SO GUYS WE HAVE A TARGET. i don't know where to go from here whether to just launch a full blown kickstarter campaign like the CICM people did or what. i'm about to pass out here in my hotel room, so if anyone has any ideas as to how to next go forward please kindly throw them on here.
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I think we need to collectively research which crowd funding mechanism would be the best fit for this type of project. There may be some that are specifically designed for medical research. I'll try to do some research and post links. Perhaps others can do the same? Also, vli, thanks so much for reaching out to them. Also, its OK to tell them you are a patient and that your responses might be delayed a bit on account of illness, etc.
aimossy
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thankyou so much Vli!!
It might be interesting to ask some of our "ME/CFS" experts if they see this research as high on this list of potential research projects they believe are needed to address the questions about this illness.
While I think it is terrific that a "world class" virus hunter is looking into this illness, I would hope that before a large campaign is started to influence where patients might be encouraged to give their often limited funds that more research and investigation is done to understand the parameters of the study and exactly how the funds will be spent and accounted for.
I believe, it is important to continue to keep your eyes wide open and ask lots of questions no matter how famous or well respected the institution or individual is who wants to be involved in ME/CFS research. Patients with this illness can be very vulnerable and the excitement and enthusiasm when anyone offers help to further research in this area can sometimes be misplaced. I would hope that good, well reasoned questions about the research are asked and answered before a patient based campaign is started to fund raise for any research project seeking funding from our patient community.
I good approach in life is never assume anything, always get your questions out on the table and the answers in writing before you even consider taking any money out of your pockets.
Wally
While I think it is terrific that a "world class" virus hunter is looking into this illness, I would hope that before a large campaign is started to influence where patients might be encouraged to give their often limited funds that more research and investigation is done to understand the parameters of the study and exactly how the funds will be spent and accounted for.
I believe, it is important to continue to keep your eyes wide open and ask lots of questions no matter how famous or well respected the institution or individual is who wants to be involved in ME/CFS research. Patients with this illness can be very vulnerable and the excitement and enthusiasm when anyone offers help to further research in this area can sometimes be misplaced. I would hope that good, well reasoned questions about the research are asked and answered before a patient based campaign is started to fund raise for any research project seeking funding from our patient community.
I good approach in life is never assume anything, always get your questions out on the table and the answers in writing before you even consider taking any money out of your pockets.
Wally