Question for people in the US - which research organization would you donate to?

[Purple]

Hello fellow US sufferers,

If you were not a sufferer but wanted to help sufferers with a non-negligible amount of funds, which research US organization would you donate the funds to? And why? How would you convince other non-sufferers our cause is important and why to choose that particular organization? Ease of making the donation in practial terms would be appreciated too.

Please reply to me via Private Message asap (it's fairly urgent!)

 

[being]

Your profile has limited access; I can't see any way to PM you.

I would donate to either the CFIDS Association's research program, Simmaron Research or the Chronic Fatigue Initiative.

Research projects funded by the CAA's research program have brought in almost $5 million dollars in subsequent funding from the NIH, which is an outstanding return on investment. The CAA provides small, pilot grants of around $100K each, if I remember correctly, to innovative projects which are designed to then go on and get the big bucks from the NIH. They thoroughly vet and peer review research applications to strengthen them so that the projects have the best chance to go on to get more funding from the NIH. They require that researchers funded by them work together and share data which increases the relevance of the findings. http://www.research1st.com/2011/10/07/roi/

Simmaron Research is Dr. Daniel Peterson's new non-profit research organization. Dr. Peterson is well known and much respected for his long time commitment to ME/CFS patients and is part of a team including Stanford and Australia's Bond University Public Health and Neuroimmunology Unit (PHANU) which was recently awarded $800,000 by The Mason Foundation for their research which is focussed on abnormalities in the blood profiles of CFS sufferers and identifying the biomarkers responsible.
http://www.bond.edu.au/about-bond/news-and-events/news/BD3_019855

The Chronic Fatigue Initiative is simply put, the big dogs, and was established by a $10 million grant from the Hutchins Family Foundation. These are world class institutions involved in this one and they're going about it in a systematic, professional and cold blooded fashion. The clinicians involved are Dr. Daniel Peterson, Dr. Nancy Klimas, Dr. Lucinda Bateman and Dr. Susan Levine, all of whom are long time ME/CFS clinicians and researchers. Dr's Klimas, Bateman and Levine have all been members of the DHHS Chronic Fatigue Syndrome Advisory Committee, I'm not sure if Dr. Peterson has or not as I can't find a past membership roster. It's still the early days for this group but I think the patient community can expect good things given who all is involved and the ground up approach they're taking.
http://cfinitiative.org/

Either one of the above three or Nova Southeastern University's new Institute for Neuro-Immune Medicine, led by Dr. Nancy Klimas, would all be excellent choices, in my opinion.
http://nsunews.nova.edu/worlds-lead...archers-joins-nova-southeastern-university-2/

 

[SOC]

I completely agree with Being. There's nothing I can add to his/her suggestions.

 

[Hope123]

I would suggest you donate to PANDORA, which is based primarily out of Florida but does work nationally. Why?
I respect research and want more money going to it but as of right now, there is no national patient advocacy organization for ME/CFS sufferers and PANDORA is the closest to it. The CAA switched from a patient advocacy organization to a research oriented org and while that is fine, while we're waiting for a diagnostic test or treatment {which could take a while}, there is no one to represent patients when they are fighting for Medicare, SSDI, disability insurance, medications, transportation, housing, etc. PANDORA has worked on projects pertaining to these mundane but important matters for people in the US. People suffer while they are waiting.

Chronic Fatigue Initiative is a family foundation from what I understand and so I am not sure they even take outside funds.

http://www.p-a-n-d-o-r-a.org/index.php

http://www.p-a-n-d-o-r-a.org/donate.php



[I should mention I belong not to PANDORA but another org but see a gap in what is needed right now.]

 

[justinreilly]

You said in your post that you needed people to get back to you right away, so this may not be useful. In any event, I think there may be only one foundation that i think everyone can agree on- the Mt. Sinai ME/CFS Research and Clinical Center. I am a patient of Dr. Enlander, who heads this center, so i may be biased (does not have a physical location at the hospital, but will direct research). A patient of his donated $1M to start it and I think Mt Sinai also chipped in.

Second best, imo, are Jose Montoya's Chronic Fatigue Initiative Center at Stanford. Next best, imo, would be Dr. Peterson's Simarron Org.

I'm mostly positive on PANDORA, but don't think they are perfect. Klimas and Bateman's orgs have good points, but also negative ones, to wit, the focus on 'fatigue' nomenclature and advocacy of exercise.

I strongly recommend against donating to the CFIDS Association of America. They definitely do a lot more harm than good. They've basically been co-opted by the frauds at CDC.

Anyway, hope this is helpful. Pls contact me if you wish to discuss.

Cheers,
Justin

 

[LilacGardenia]

I'm not really sure if a charity like this already exists, but in addition to research I'd definitely like to donate to a charity that helps patients (especially bed bound ones) cope with bills, get to doctor appointments, get the basic necessities, etc. There are so many charities that do these kinds of things for people with cancer--it's great, but I'd also like to reach out to and increase publicity for ME. In he US there's a lot of support for cancer research and cancer-related causes (people even get sucked in to those scam charities and people faking cancer--it's horrible.) I doubt most people even know what ME stands for. :-(