(Thank you to Cindy Siegel Shepler & David Shepler for your tireless efforts to support Team OMF.)
A Double Platinum celebration for Pat Jankovic’s Platinum Life Master milestone was hosted by her friends on Saturday, August 12th, at the Knoxville Bridge Center, while fundraising for a Platinum-rated nonprofit. Pat is a highly respected member of the KABC, as evidenced by the turnout of 30 tables. She has co-chaired many local sectionals, served in numerous offices and leadership positions, and helped to spearhead a zero tolerance approach years ago which has greatly contributed to the membership growth the KABC has experienced in recent years.
Over $1,000 was raised for the Open Medicine Foundation (OMF), a Platinum-rated nonprofit founded to end Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and other related chronic complex diseases. ME/CFS is a disease for which there is no known cause or cure, no FDA-approved treatments, and no biological test for diagnosis.
This devastating and life-altering disease affects up to 2.5 million people in the U.S. alone and over 17 million worldwide. ME/CFS can strike anyone, at any age, without warning. It is a global crisis with 80% of patients unable to work or attend school and 25% of patients are entirely house-bound, bed-bound, or wheelchair bound. Suffering from a host of symptoms that are chronic and incapacitating, patients with ME/CFS have a lower quality of life and higher rates of disability than patients with AIDS, multiple sclerosis, diabetes and rheumatoid arthritis.
It’s invisible. It’s pervasive. It’s under-researched. The National Institutes of Health allocated only $8 million last year for research into ME/CFS. (To put this in context, the annual NIH research budget for multiple sclerosis, with 400,000 sufferers, is $94 million.) This incredibly low funding is the reason so little is known about ME/CFS.
Pat had become aware of this horribly neglected disease and the Platinum LM celebration provided an opportunity to shine a light on a Platinum nonprofit determined to change this. Following her lead, the Thursday Midday Duplicate game joined in. Both clubs were honoring Pat’s dear friend, ACBL member & Silver LM Cindy Siegel Shepler. Cindy took up duplicate bridge in 1997 at age 40, five years after abandoning her San Franciscan life and successful career in the healthcare industry, due to the debilitating effects of ME/CFS. Cindy had to discontinue duplicate bridge in 2008 as her long-term struggle with ME/CFS progressed. Despite her ‘dis-abilities’, she was a very successful and fierce competitor during the years she played.
Rather than focusing on all she’s given up, Cindy is grateful that she had a hometown like Knoxville to return to, with family, resources, and healthcare. As an ME/CFS patient-advocate, Cindy is on a mission to speak out about this devastating disease, praying that the philanthropic and caring bridge community will recognize the desperate need for private funding and quickly step-up — not for herself — but for the millions of young patients who are so sick, desperate, and without hope.