Unite to Fight!
Patient Advocates Making a Difference...
Tina Tidmore is PANDORA's Director of Communications, an administrator with The Worldwide Patient Alliance (MCWPA) and ME/CFS/FM patient (2003).
Tina's career before ME/CFS included newspaper reporter and editor brings an important element to advocacy and awareness efforts. Gradually, she was unable to hold down a corporate job, having to work from home in reclining position most of the time. Tina discovered advocacy by posting on message boards and chat rooms."I started commenting on the actions of patient organizations, government health agencies and researchers and their studies. She is now a mainstay at PANDORA and MCWPA. "My deepest fulfillment is when we help a patient or when a patient donates their time to help us."
MCWPA, a collaboration of Tina's and Marly Silverman, was born out of the need to bring print and video media to the advocacy effort. "This ad campaign is a plan to build, build and build pressure, as the AIDS activism did in the 1980s" This week MCWPA rolled out the first campaign, issuing a press release and placing a half page ad in the Washington Post. The effort marked the first ever ad campaign for ME/CFS. "The point of this effort is to be patient-driven, with major decisions made by patients using today's technology, It also depended on patient donations and patients volunteering. Patients did donate bringing in over $12,000 within a few short months. The campaign was reported all over the world and brought attention across Facebook and other social based media.
"We need the research; we need patients who can explain that research; we need the lobbying; we need the "good cop and bad cop. I hope the end result will be greater than the sum of its parts."
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Please let Tina, Pandora, and the team at MCWPA know how much we appreciate their work.