Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

Knoxville Bridge Center goes DOUBLE PLATINUM while celebrating & fundraising

By David Shepler, Knoxville Association of Bridge Clubs

(Thank you to Cindy Siegel Shepler & David Shepler for your tireless efforts to support Team OMF.)

Hosts: Sara Leckie, JoAnne Newby, Thomas Timm, Lynn Smith. Honoree Pat Jankovic (center, wearing Platinum tiara). In blue: David Shepler, Cindy Siegel Shepler.

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.

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

Averting a second pandemic:

Open Medicine Foundation leads groundbreaking international study of

Long COVID’s conversion to ME/CFS

AGOURA HILLS, CALIF.  — Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome —  to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.

Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it “a potential second pandemic.”

OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.

The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world’s top researchers and ME/CFS experts.

BACKGROUND

In a significant percentage of patients, infections preceded their development of ME/CFS.  For example, according to the CDC about one in ten infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.

THE STUDY

The ability to follow the development of ME/CFS from a known viral infection is unprecedented to date and crucial to researchers’ understanding of the disease. The focus of this study is to find the biological differences between persons returning to good health after COVID-19 and persons who remained ill more than six months after infection and developed ME/CFS.  Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies.

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About Open Medicine Foundation

Established in 2012, Open Medicine Foundation leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome, Fibromyalgia, and Post COVID. OMF adds urgency to the search for answers by driving transformational philanthropy into global research. We have raised over $28 Million from private donors and facilitated and funded the establishment of six prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.

CONTACT:

Heather Ah San

Development and Communications Manager

1-650-242-8669

heather@omf.ngo