Coral Gables, FL, March 02, 2011 --(PR.com
)-- The Patient Alliance for NeuroEndocrineImmune Disorders Organization for Research and Advocacy, Inc., PANDORA, has hired Michelle Lonchar as an advocacy coordinator for NeuroEndocrineImmune patients participating in May 12 ME/CFS & FM Awareness Day and Lobby Day. These include patients with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), fibromyalgia, Gulf War illness, multiple chemical sensitivity and chronic Lyme disease.
One feature of this year’s activities will be the “Speak about ME” grassroots effort to show legislators that NeuroEndocrineImmune diseases also afflict children. PANDORA will give assistance to these advocates through its Advocates Extraordinaire™ program.
Lonchar served as a mobilization and Action Network coordinator for the American Pain Foundation from 2006-2008, where she recruited and trained advocates to promote favorable pain policy, legislation and practice. She was instrumental in securing over 100 organization endorsements and advocate testimonies submitted to Congress in support of the National Pain Care Policy Act. This led to success as National Pain Care Policy Act provisions are included in the 2010 Affordable Care Act.
“I am excited to be working with PANDORA to advocate for the millions of people suffering from fibromyalgia, ME/CFS and related conditions that are poorly understood by health care professionals and the general public,” said Lonchar. (See Lonchar's photo here: http://archive.constantcontact.com/fs048/1098473133029/archive/1104681651297.html)
Recent scientific discoveries, such as the retrovirus XMRV, distinctive proteins found in ME/CFS and Lyme patients and drug treatments for fibromyalgia, have led to increased patient advocacy. These developments mean more government-funded research will lead to effective treatments improving the quality of life of patients and lessening the toll on the nation’s economy.
“Michelle is a welcome addition to PANDORA’s overall patient advocacy effort and is being brought on board at an ideal time,” said PANDORA Public Policy Director Dr. Kenneth J. Friedman. “Those of us who attended the fall 2010 CFSAC meeting came away with the distinct impression that the US government was beginning to listen to us. With Michelle coordinating our Lobby Day activities, we have the ability to make Lobby Day 2011 our most effective Lobby Day to date.”
PANDORA will push for action on the recommendations of the federal Chronic Fatigue Syndrome Advisory Committee that the federal government establish and fund centers of excellence, such as the Whittemore Peterson Institute; the planned Stanford Chronic Fatigue Initiative and the planned NeuroEndocrineImmune Center (NEI Center™), a PANDORA project supported by the New Jersey legislature. Also, PANDORA promotes more biomedical research to discover the pathophysiology of NeuroEndocrineImmune disorders.
About PANDORA - Patient Alliance for NeuroEndocrineImmune Disorders Org. for Research and Advocacy, Inc., based in Coral Gables, Florida, was founded on July 1, 2002, by Marly C. Silverman, an ME/CFS and fibromyalgia patient. Its mission is to raise awareness of the plight of persons with ME/CFS, fibromyalgia, chronic Lyme disease, multiple chemical sensitivities / environmental illness and Gulf War illnesses. PANDORA advocates for an increased quality of life for persons who are chronically ill. PANDORA is built on hope, is strong on advocacy, and champions cures for NeuroEndocrineImmune disorders through research. For more information, visit www.pandoranet.info.