first Dysautonomia Patient Conference & Lobby Day

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

first Dysautonomia Patient Conference & Lobby Day

Postby Cece » Wed Mar 20, 2013 10:00 am

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.
Cece
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Re: first Dysautonomia Patient Conference & Lobby Day

Postby esta » Thu Mar 21, 2013 3:26 pm

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.
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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