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happy41

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  1. Mary, thank you for all that you do for Cushings! It appears to me that we DO have federal funding for Cushings research -- and, for a rare disease, pretty substantial funding -- about $2 million a year. Or about $1000 per person who is diagnosed with Cushings in the US each year. It is spent supporting Dr. Neiman at NIH and her staff. I suspect that a substantial amount of it is spent for Dr. Neiman to travel to conferences and provide educational talks to other endocrines and to pay for the endocrine fellows in their clinic. If people think there are other, higher priorities, they need to contact the head of NIH and ask. His email address is francis.collins@nih.gov. He is the geneticist who found the gene that causes MEN I. So he should know what cushing's is. Items that I think should be a priority would be: 1. Funding to allow Dr. L and Dr. F to compile and publish the results of their research on what tests work well for diagnosing cyclic cushings and what tests do not work as well. I would bet that $100k each would be more than enough to each would allow them to hire a full time researcher to analyze the data and get a publishable article put together. 2. Funding to characterize the hyperplasia that cyclics seem to have both with respect to the pituitary and adrenal glands. There is research going on in Europe that hypothesizes that it is caused by deficiencies in dopamine, which would dovetail well with the use of cabergoline for some cushing's patients. MDA, Swedish and Elmbrook undoubtedly have enough pathology samples from us to provide a pathologist with plenty of "stuff" to work with. I bet a year's worth of a full time pathologist in a government funded situation and support would not cost more than $300k. 3. Genetic testing with family groups in order to identify the gene that causes cyclic cushings -- since it seems to have a high incidence of multiple family members who are affected. I have less of an idea of what that would cost, but it did not take hundreds of families to find the gene for MEN I. I suspect that we have enough families for such a study just with the people who participate on this board. In short, I think that if we gave up the "training" funding and put it into research for a couple years, the trainers would have something far more useful to be talking about and training new endos in.
  2. Sooo how did the appt on the 25th go?!?So excited to hear!! Who did you meet with?!? Hope it is good news :)

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