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Old Mon Aug 10, 2015, 11:50 AM
Bob Macfarlane Bob Macfarlane is offline
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Join Date: Feb 2010
Location: Soutwest Ranches, Florida
Posts: 126
Put off again.

Going back to early January, 2015, John Huber, former Executive Director of the Aplastic Anemia/MDS International Foundation told me about a study that was going to be conducted by Dr. David Steensma from Dana-Farber.

The study was estimated to take a year and was going to look into the linkage between MDS and Agent Orange. To my face, with my wife sitting there, John told me at my BVA hearing in DC on March 10, 2015, that the study was fully funded and just waiting upon David.

As recently as June 14th, John wrote me to say:

I will be in Boston with David tomorrow. No one I know has given up. We are meeting to set the study launch date.

Now my latest correspondence says:

Good morning Bob,



Thank you so much for you inquiry about the proposed project. I can update you with a status. Last month the proposal was reviewed by the MDS Clinical Research Consortium, of which Dr. Steensma is a member. The group was enthusiastic about the project, and supported it from a scientific standpoint.



The delay at present is identifying the appropriate source of funding to cover estimated costs. Within the next 6 weeks we’ll have a better understanding of our ability to fund the project in light of other commitments. Until such time as we can fund the project, we’re not ready to make any public announcement.



Thanks again for your note, and please let me know if you have additional questions about the study.



Kind regards,

EJS





Ellen J. Salkeld, PhD

Senior Director, Research & Health

Professional Programs

Aplastic Anemia & MDS International Foundation

(301) 279-7202 x 123


I don't believe John was trying to mislead me in any way but the timing is very interesting. Concurrent with John telling me about the project back in January, John also turned in his retirement date of July 31.

The reason none of you receiving the "blind" copy of this are just finding out is that I was asked by John not to tell anyone else and I honored John's request. Now I feel betrayed by the Foundation. Not only do I feel I was betrayed but that John was also betrayed.

Understanding that all of you with the "blind" copy are former military or the widows of former military, please be nice if you contact the new Executive Director Kathleen Weis (weis@aamds.org). Ms. Weis came to the foundation from the American Red Cross.

You might want to ask her how this went suddenly from "fully funded" and "ready to go" to "proposed?"

You suppose the foundation figured out that 'Nam vets are dying off fast enough that it won't really matter soon? The foundations mission statement says "supporting research to find cures" and not "cures and causes."
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