Reports from the DC NDRF Conference

[Guest guest]

I'm in touch with a couple people who attended the National Dysautonomia

Research Foundation Conference in Washington DC last week.

http://www.ndrf.org

Here are their comments:

" the conference was very good. they had Doctors Freeman, Grubb, and Low who

were excellent speakers. they also had Doctors Coghlan, Goldstein, who

weren't as good and Doctors ,, Robsertson and Levy who i didn't

meet with. the keynote speaker was not knowledgeable about our illnesses,

but seemed sincere in her promise to bring our illness to the attention of

those who make the decisions about how research money is spent in the Dept

of Health. They had one session devoted to MSA and judging by the number of

folks who attended MSA was not the most well represented disease. mostly

POTS sufferers at the conference "

" Mostly the conference seemed to be about POTS. I'm not exactly sure what

that is. And other disautonomia problems. I learned a lot, even if it was

just how to pronounce words. My eyes would glaze over when some of the

words. The physicians were very, very knowledgeable. I don't know of a

single question they were asked that they couldn't answer. One break-out

sessions was for care-giver. I really connected some a few people there. I

have carried this connection back with me to stay in touch. There was not a

lot about MSA. However, I learned things I didn't know. It was enough for

me. "