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OMF Newsletter – Winter 2018

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By Open Medicine Foundation • • February 12, 2018

OMF Newsletter – Winter 2018

From Open Medicine Foundation.

2018 Begins with a Special $5 Million Gift from the Pineapple Fund

Early in January, we were joyfully surprised by a generous $1 million gift from the Pineapple Fund, an anonymous bitcoin investor whose website states “because once you have enough money, money doesn’t matter.”

“Pine” said that he/she is “inspired and excited by the work” that OMF is doing and understands how devastating this illness can be. Pine said that “this is one of the most important research areas that Pineapple Fund can fund.”

We are overjoyed that, less than two weeks after announcing this gift, “Pine” committed to donating another $4 million to OMF.

We invite you to join us in thanking the Pineapple Fund by adding your appreciation to our online community-wide thank you card. Click here to add your message: Community Thank You Card

Thank you for Making 2017 a Remarkable Year!

We are thrilled to share that with your generous support we raised over $3 million in 2017 to accelerate our urgent research agenda!

Thank you to each and every person who donated from $1 to $1 million. As a united community, we are advancing research that will find answers to end ME/CFS.

In the coming weeks, we will share with you a detailed summary of the many accomplishments you helped OMF make in 2017. Watch your inbox!

Introducing the New Analyzing Patient Data Study (APS)

We are launching this new research study to perform a retrospective analysis of clinical laboratory data from hundreds of ME/CFS patients. This study will gather and analyze the clinical laboratory tests and results ordered by ME/CFS specialists. We are hopeful that analyzing a large number of clinical records using robust statistical methods may reveal new insights.

Drs. David Kaufman and Bela Chheda (Center for Complex Diseases, CA) and Dr. Susan Levine (ME/CFS Clinician & Researcher, NY) will lead the first phase of this study using de-identified results from their patients. Later, we hope to bring on additional clinicians. Eventually, we plan to share the results with the whole ME/CFS medical and research communities.

We are very grateful to our newest partner, Statisticians without Borders, who has stepped in to lead the data analysis pro-bono. We are grateful to Hany Zayed, PhD, Head of Data Sciences Solutions, Rigel Pharmaceuticals and Statisticians Without Borders volunteer who will lead this project.

Update: Metabolomics Validation Study

Dr. Robert Naviaux has shared a preliminary summary of the results of the OMF funded Metabolomics Validation Studywhich aims to validate his groundbreaking findings of metabolic features of ME/CFS that he published in 2016. Dr. Naviaux reports:

“23 of 30 (77%) of the pathway abnormalities in males and females that were found in the ME/CFS1 study were validated in the ME/CFS2 study, despite large differences in clinical practice, and geography between the two patient cohorts.

Overall, these results add support for the conclusions of the ME/CFS1 study. The syndrome of ME/CFS results from the persistence of a dauer-like metabolic program that produces an energy conservation state mediated by a persistent cell danger response (CDR) to harsh environmental conditions, but at the cost of long-term disability.”

We will continue to keep you updated on this study.

Update on Suramin Clinical Trials

Dr. Robert Naviaux has informed us that, “Bayer has made the decision not to provide suramin for his proposed clinical trials in autism and ME/CFS. A new, FDA-approved source of suramin is expected to become available in about a year.” Dr. Naviaux plans to begin his FDA-approved studies in autism and ME/CFS when the new suramin becomes available.

Dr. Naviaux continues, “While this news is disappointing, there are some advantages to waiting for this new suramin manufacturer.” In the past, Bayer has been slow to take interest in new projects, which has led to interruptions in Dr. Naviaux’s studies.

“We are hopeful that the new supplier of suramin will, in the long run, offer a simpler path forward and fewer potential delays in testing. If future clinical trials show that suramin is safe and effective in treating ME/CFS, then the FDA will have all they need to make a decision on approval in a shorter period of time than before. Ultimately, this means that the drug can become available for patients with ME/CFS faster than was possible before,” said Dr. Naviaux.

We will continue to keep you updated about the new manufacturer.

A Word from our CEO/President

As we begin the new year, we are filled with hope, optimism, and a renewed commitment to accelerating research. Each and every day the patient community is in our minds and hearts and inspiring us to do more and work faster.

OMF is working on many projects to help improve the lives of all patients. In the coming months, you will be learning about many of these new and expanded efforts. Thank you for your ongoing support to help establish and advance this important work.

One of our major goals is keeping you, our community, informed. If at any time you miss our news in your inbox, please be certain to check our website for the latest newsletters and news.  In addition, if you are not on Facebook, please be certain to check our website weekly for the latest Science Wednesday posts.

Working together, I am looking forward to 2018 as a year of great hope and promise.

With hope for all,

Linda Tannenbaum

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