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LD Advocate

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PATIENT ALLIANCE NEUROENDOCRINEIMMU DISORDERS ORG FOR RESECH & ADV INC
July 25, 2013

In 2007, I first met members of PANDORA and its founder Marly Silverman in person at a conference in Fort Lauderdale. As founder/president of the LIFELYME Foundation, Inc., I established our organization to serve as a educational resource for Lyme disease and other Neuro Immune Disorders. In 2008, two members of PANDORA were invited to speak at a conference our organization co-sponsored with the University of South Florida in St. Petersburg, FL. The conference was called, "Similarities and Paradoxes in Chronic Illnesses". Our intention was to bring together for the first time the top physicians and researchers with expertise on illnesses under the NEI umbrella to share their expertise on CFS/ME, Fibromyalgia, Lyme Disease, Gulf War Syndrome and Environmental Illnesses. Speakers Included: Brian Fallon MD, Nancy Klimas MD, Charles Ray Jones MD, JJemsek, MD, Leslie Fein MD, Dr. Kenneth Friedman Ph.D, and Kerry Clark Ph.D. Epidemiologist. In the following year, LIFELYME partnered with PANDORA to establish a NEI Center in New Jersey. A 'Resolution' to establish a NEI Center in NJ was passed unanimously. Hopefully in the future progress will be revitalized and make this dream a reality. Support is paramount to the success of the future visions of PANDORA. The members of PANDORA are giving their all in this effort to provide awareness, education, research and patient care for all patients suffering with these illnesses. Support PANDORA - The health of all Americans in the future depends on everyone's support.

Ways to make it better...

If I had to make changes to this organization, I would...

Not a thing. I have been an active member in the health community for 12 years, and the leadership and professionalism exhibited by PANDORA's advocates is inspiring. America is facing a Pandemic. The number of patients is growing faster than the facilities available to treat patients. As an advocate I have spoken with thousands of patients from all over the country, Canada and Europe. NEI Centers in every state bringing patients, physicians and researchers together is a viable solution.

More feedback

Will you volunteer or donate to this organization beyond what is required of advisors?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

MY ROLE:
Advisor