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Past Participants in the Advocates Extraordinaire™ Program:
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Pat Fero, a long time Executive Director of the Wisconsin ME/CFS Association, Inc.
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Dr. Mary Schwietzer, now a blogger and long-time advocate
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Dr. Lina Garcia, a physician from Columbia who interned under the well-known ME/CFS and GWI specialist, Dr. Nancy Klimas
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Barbara Soliday, a Miami resident whose daughter has ME/CFS
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Dr. Beth Wheeling, psychologist in South Florida
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Sandra Lanford, founder of the LifeLyme™- Lanford Foundation, Inc, Tallhassee Florida
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Connie Borschell, former PANDORA director, Leaders Against Pain and Empowerment Group Facilitator in Milton, Florida
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Bonnie Thornber, retired R.N., now a PANDORA director
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Cort Johnson, blogger, science writer and founder of Phoenix Rising
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Michael Munoz, president of the
Rocky Mountain CFS and FM Association
(RMCFA), currently Executive Director of
RMCFA and member of the Steering
Committee for the Coalition4MECFS.org. -
Pat Sonnett, long-time advocate, Miami
CFIDS Suport Group and now on the board
of directors of Phoenix Rising
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Joan Bass, director of the Massachussets
CFS Association.
PANDORA’s Advocates Extraordinaire™ program provides leadership advocacy training for NEIDs patients to speak to the news media and advocate to their political leaders, as well as educating the public of the plight of individuals with NEIDs.
In 2007 and 2011, PANDORA sponsored leadership training sessions. As a result, some of these trained individuals lobbied Congress in 2007 and 2011 and testified at the Chronic Fatigue Syndrome Advisory Committee meetings, effectively communicating the plight of people with NeuroEndocrineImmune diseases.
See a webinar of the 2011 Advocates Extraordinaire training.
In May 2011 in Washington D.C., PANDORA provided training to patients so
they know how to advocate for their illness to the press and Congress.
In 2007,
Advocates Extraordinaires Dr. Lina Garcia, Marly Silverman and Barbara Soliday met with US Representative
Ileana Ros-Lehtinen.
They gave congressmen letters from patients who could not come in person but participated in the Empty Chair project.
| HEALTH CONDITIONS LIBRARY | ADVOCACY & AWARENESS |
CDC PETITION |
ABOUT THE NEI CENTER |
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PANDORA is strong on advocacy and awareness to improve the quality of life of those with NEI diseases. This is being accomplished through multiple approaches: • Educating the public about NEIDs • Educating physicians about the true nature of NEIDs • Advocating for state and national governments to increase research into NEIDs • Advocating for government health policies that will improve the quality of life of NEIDs patients. Read More > |
telling the CDC they need to make changes to their CFS research program. The CDC has already made some progress by meeting with patient organizations and working with other ME/CFS clinicians and researchers. They have started the process of refining the CFS diagnostic criteria. But much more is needed. They have a long way to go. |
The (NeuroEndocrineImmune) NEI Center will be the first research center of its kind. Patients will benefit from cutting-edge research and clinical care. It will have the computer-aided disease diagnosis and treatment (CADDT) system, which will be specifically designed for multi-system illnesses and complex diseases. Assistance in accessing social services will also be offered so that patients will feel better, live longer and have an improved quality of life. For more information, visit the NEI Center website. |
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