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first Dysautonomia Patient Conference & Lobby Day

Posted: Wed Mar 20, 2013 9:00 am
by Cece
http://www.dysautonomiainternational.or ... php?ID=139
(link taken from Dr. Arata's facebook page)
Conference topics include:*
Overview of Primary Autonomic Disorders & Research Update
Gastrointestinal and Nutritional Issues for Autonomic Patients
EDS, RSD & Pain Disorders
Secondary Autonomic Dysfunction
Exercise & Physical Therapy for Autonomic Disorders
Coping with Chronic Illness: How to Live Your Best Life
Legal & Financial Issues for the Dysautonomia Patient
Caregiver Q & A
Youth Led Breakout Session
Lobby Day Training Session
Keynote Speaker
Lobby Day
On Sunday evening, Dysautonomia International will provide a briefing on the issues we will be speaking with our government official about, and an advocacy training session on how to make the best of your lobbying experience. Monday morning, we will take charter buses to Capitol Hill. We will split into smaller groups to attend meetings with multiple congressional offices. We will return back to the hotel as a group to to de-brief on our meetings. After brief closing remarks we will conclude the conference by early afternoon.
'Secondary autonomic dysfunction' would be us, with autonomic nervous system dysfunction caused by the CCSVI or the MS. I didn't know I had it until I had the autonomic improvements after the venoplasty.

Re: first Dysautonomia Patient Conference & Lobby Day

Posted: Thu Mar 21, 2013 2:26 pm
by esta
this is new and it is from dr arata i bet...
i believe, in order to stay out of harms way from neuros etc. he went one step back to move forward.

for us? i'm not sure, but it could just be my skepticism...certainly worth watching.