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ME/CFS and related chronic complex diseases

Poetry & Art Slam Builds Awareness of ME/CFS

Open Medicine Foundation Community Inspires Hope

May 21, 2019 (Los Angeles, CA) – In 2012, two forces changed lives.

Laurie Glass, of Wisconsin, became chronically ill and housebound from myalgic encephalomyelitis/chronic fatigue syndrome (often referred to as ME/CFS). Laurie had been an active and busy person whose illness now confines her to the couch much of the time. Her passion and love for writing was put on hold as her concentration just wasn’t there.

At the same time Laurie became ill, a beacon of hope was born when, in 2012, Open Medicine Foundation (OMF) was founded with the mission of launching aggressive research strategies to end ME/CFS.

This year the two met through the Hope & Heart Unite for ME/CFS – a new campaign by OMF and Lev Leyztan – to build awareness for this debilitating disease affecting more than 20 million globally. The organizers elicited poems and art submissions from people in 17 countries, and more than 2,000 people voted on the 130 entries to select the poem, “Even Though,” by Laurie Glass, (View the poetry slam reading here.)

Hope is key for those suffering from ME/CFS. Many can no longer work or attend school, are in constant pain, and suffer from numerous symptoms. Hope was the significant criteria for selection of Laurie Glass’s, “Even Though,” which ends with these words: “We try to keep believing that better days will come.”

Laurie says she deliberately kept the last line of each stanza in the poem upbeat, with words like “We keep our inner strength,” and “We’ll never stop trying.” She emphasizes “that OMF’s work is so vital for us. They give us more hope for a treatment than we have ever had.”

“There’s so little we can do in this community, but we want to do everything we can to be seen,” said Glass.

Laurie’s message was interpreted by singer/songwriters Maxwell Elefant and 95North (aka Joseph Linzer). The melodies these young composers created will touch your soul while boost your spirits for the promise of a better tomorrow. “Keeping the Hope” is written, scored, and performed by Maxwell and 95North and was inspired by Laurie’s poem “Even Though.”

The cover art, “Moon Tide,” a brightly glowing moon emerging from a darkened sky – a fitting image for hope — was submitted by patient and artist Isabel Butler, of the United Kingdom. Isabel describes herself as an “ME/CFS/Fibromyalgia warrior of 16 years.” Art has become her passion and voice.

The campaign is culminating with the release of the song “Keeping the Hope” as part of OMF’s #MayMomentum and is a partnership between OMF, the world’s leading fundraiser for research into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and related chronic diseases, and the non-profit organization Lev Leytzan, dedicated to healing through the arts.

“This project has brought passion together and will offer inspiration and hope for millions of people. We are thrilled to share this song of hope,” said Linda Tannenbaum, OMF Founder and CEO/President.

Listen to the song on OMF’s Youtube channel:

About OMF

Founded as a nonprofit in 2012, OMF has raised over $18 million to fund ME/CFS research and increase public awareness. OMF’s funded research is overseen by a renowned Scientific Advisory Board, including two Nobel laureates and five members of the National Academy of Sciences, directed by Ronald W. Davis, PhD, Director of the Stanford Genome Technology Center.

About Lev Leyztan

Lev Leytzan: The Heart of Therapeutic Clowning (HTC) was founded in 2004 and delivers therapeutic clowning to tens of thousands of children and adults in hospitals, nursing homes, hospices, orphanages, and private residences across the U.S. and in eastern Europe and the Middle East. The nonprofit collaborates with medical and mental health professionals and circus artists to create a rigorous training program that prepares dedicated individuals in the art of therapeutic medical clowning. Lev Leytzan’s Mind Body Institute has been working closely with medical teams to provide health through expression.

About Artists

Read Laurie’s latest publication – eBook, free on Amazon, called Coping with ME/CFS,

View Isabel’s Artwork here:

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