$$$ to support research NOW

[urbantravels]

A question. Besides WPI and CAA, what organizations or foundation, etc., would you donate $$ to NOW to support ongoing or potential CFS research?

I'm deliberately taking WPI and CAA off the table for the purposes of this discussion. Let's assume that everyone already has their views about WPI and CAA, and can make a reasonably informed decision about whether to donate.

After those two organizations, I sort of come up blank. Where would one donate to support Nancy Klimas' research? Or Lucinda Bateman's? Or Ila Singh's? Would it be their respective Universities in each case or would one need to donate to some more specific entity?

Is the Workwell Foundation (Pacific Fatigue Lab) actually a separate viable institution? It isn't particularly Googlable.

 

[Otis]

Morton Fund for CFS

Nancy Klimas uses the Morton Fund (named in honor of a patient who died of ME/CFS) for her CFS research. She is really doing a great job of using these dollars to supplement the Gulf War illness money she gets to study us simultaneously.

There are details about donating toward the bottom of the following post.

http://aboutmecfs.org/Rsrch/XMRVKlimasII.aspx

This gets my vote.

 

[ahimsa]

CFS Clinic at the Johns Hopkins Childrens Center

This is an extract from the PDF file that was distributed as part of the recent Managing Orthostatic Intolerance webinar presented by Dr. Peter Rowe (see http://www.cfids.org/webinar/series2010-past.asp#13 for the video or the full PDF file):

The CFS Clinic at the Johns Hopkins Childrens Center has been able to remain in operation
over the past 15 years, providing direct care for over one thousand individuals with CFS, and
indirectly helping others by consulting with other physicians in the region and around the world.
This has only been possible through the generosity of many individuals, families, and
foundations. Our goal is to continue to expand funding to provide more staff for both clinical and research efforts. Those wishing to contribute to this effort are asked to contact:

Jennifer Balzano
Associate Director of Development
Johns Hopkins Childrens Center
One Charles Center
100 N. Charles St., Suite 200
Baltimore, MD 21201
410-516-4513
www.hopkinschildrens.org

Since Orthostatic Intolerance (specifically NMH - Neurally Mediated Hypotension) is such a big part of my illness, and since the only reason I ever got a tilt table test in the first place is because a friend from high school was in one of the first studies done by Johns Hopkins, I have a soft place in my heart for that whole team of doctors. I tried to get into that first study but it was full by the time I applied.

The amazing thing is that one of the doctors (Dr. Bou-Holaigah, sp?) took the time to call me at home to tell me that the questionnaire I submitted led him to believe that I did have some kind of orthostatic intolerance. He suggested that if I could find a local doctor who would approve it then I should try to get a tilt table test. And the rest is history. Understanding what was causing so many of my symptoms, and having some suggestions on how to treat them (or at least avoid things that made them worse), was no cure but it was a huge help for me.

 

[CBS]

Drs. Bateman, Light (both of them) and Singh

If you would like to donate to Drs. Bateman, Light (either or both), and/or Singh, you can do so through OFFER Utah, the patient support organization started by Dr. Bateman. Here is the link to the donations page: http://www.offerutah.org/donations.htm.

Keep an eye out for the videos of the 2010 OFFER Conference here: http://www.offerutah.org/conferences.htm. Dr. Singh presented that morning.

Here are a few more details on donating from Dr. Bateman:

A good way to donate to Dr. Bateman, Drs. Light or Dr. Singh is to donate to OFFER. OFFER is a Utah nonprofit organization with a mission to support CFS research. Your donation is tax deductible, and OFFER has little administrative overhead, so the total donation, when approved, can be given to the researcher. When you donate the money to OFFER, specify that you want the money "earmarked" for a specific researcher or project. OFFER is small enough that the board can usually reach a consensus and can deal with donations in a personal manner. If there is any problem with directing your donation to the intended CFS researcher, this can be discussed with you directly and worked out to your satisfaction.

I also wanted to include a note about the OFFER fundraiser held earlier this year on PR. First, thanks to everyone that donated. The fundraiser was a huge success. I feel like stretched your contributions as far as we possibly could have. In addition to the funds donated by PR members, over the course of several conversations, Lenovo agreed to giving us a very generous discount on a state of the art laptop and docking station. We also had a very generous donation of software and expertise from a fellow PR member.

The research subject database is up and running. A lot of work remains for the database to reach its full potential (weve outlined several years worth of work). We are working to populate the database with information/subjects from a number of sources. We are also looking into ways of designing the database for use by, and compatibility across, a number of CFS researchers/organizations. I had hoped to write up a summary for PR several months ago. Again, its been a rough last six months. Hopefully I can put something together for PR in the very near future.

Again, while not an employee of OFFER or the Fatigue Consultation Clinic, Id like to express a very sincere thank you on behalf of OFFER and the FCC to everyone that contributed and a special thanks to Cort for making it possible through PR.