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The event included a pre-release screening of “Invisible,” a 60 minute documentary produced by Rik Carlson and Michael Thurston featuring interviews with patients speaking of their experiences and need for awareness and solutions of their debilitating illnesses, including chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), and fibromyalgia (FM).
Event included launch of online eBay store and auction for a donated consultation with Dr. Nancy Klimas, internationally recognized immunologist with 3-year patient waiting list
“Coming out in public with diagnosis”
For many in the audience, the film and the event itself provided comfort and acknowledgement of an illness they have been told doesn’t exist. Beth Gilbert, whose parents own the restaurant, was diagnosed with chronic fatigue Syndrome in 2001, but it wasn’t until that evening that she publicly discussed her illness, as she felt it was the right time in her life to focus on raising awareness and helping patients with the condition see that there is help to getting their lives back.
“My family was very supportive offering to host this event at their restaurant to support me, as they were very proud to see that I wanted to give back to a community that helped me,” explained Gilbert, a pharmaceutical and medical device analyst and writer. “Being part of this event was very important for me. There needs to be more awareness and in turn, more funding for the ground breaking research that is on the cusp of advancing treatment from symptom control to understanding the underlying mechanism of disease. Major advances in genomics and proteomics will enable researchers to uncover biomarkers and the signal disruptions that occur in this disease. It was such a pleasure working with an organizations like P.A.N.D.O.R.A. that is helping to make a difference toward those goals.”
Marly Silverman, founder of P.A.N.D.O.R.A., the Coral Gables-based nonprofit organization whose mission is to raise awareness of the plight of persons with chronic fatigue syndrome, fibromyalgia, Gulf War illness, multiple chemical sensitivities, environmental illnesses, and persistent Lyme disease and advocate on quality of life issues, praised “new” advocates like Gilbert and her parents, as well as the long-time staff and supporters of the organization since its inception in 2002. “For patients, this event is part of an ongoing education about how to live better with their chronic illnesses, and for people who don’t know about CFS, it’s an eye-opener towards better understanding and support.”
During the event, P.A.N.D.O.R.A. also launched their online eBay store. All proceeds go directly to P.A.N.D.O.R.A. Part of eBay’s Giving Works charity program, sellers can also auction their products and assign a percentage of the proceeds to P.A.N.D.O.R.A.
For more information about P.A.N.D.O.R.A., including their sponsorship of the upcoming seminars on “Breaking Free of the Confines of Chronic Illness” hosted by ME-CFScommunity.com, and scheduled for June 13 and June 14, visit www.pandoranet.info
About P.A.N.D.O.R.A., Inc- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy P.A.N.D.O.R.A. was founded on July 1, 2002 by Marly C. Silverman, a chronic fatigue syndrome and fibromyalgia patient. Our mission is to raise awareness of the plight of persons with chronic fatigue syndrome, fibromyalgia, Gulf War illness, multiple chemical sensitivities, environmental illnesses, and persistent Lyme disease and advocate on quality of life issues. P.A.N.D.O.R.A. is Built on Hope - Strong on Advocacy - Finding a Cure through Research. For more information, visit www.pandoranet.info
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