OMF Newsletter – July, 2016

ME / CFS Severely Ill Big Data Study Update: Sample Collection Completed

OMF is excited to announce that sample collection has been completed for the ME / CFS Severely Ill Big Data Study. The completion of sample collection means we now have the most multifaceted and downreaching data ever gathered to analyze and test in our search for a cure.

As co-principal investigator (along with Dr. Ron Davis) of the OMF ME / CFS Severely Ill Big Data Study, Dr. Andy Kogelnik and the OMI clinical research team selected candidates, and traveled to patients’ homes to draw samples and conducted EEG, sleep and cognitive studies.

The process included processing hundreds of sample tubes immediately after collection, biobanking samples, testing samples locally, sending out for tests to other leading laboratories, keeping track of every detail and recording the results.

This study would not have been possible without the dedication and effort of the highly skilled team of contributors.  We are grateful to all involved and sincerely thank the OMI team for their contribution. (see most of OMI team pictured below)

We are also tremendously grateful to the patients that gave of themselves to make a big personal sacrifice for the pursuit of groundbreaking science.

Dedicated Volunteer Returns in New Full Time Position

Those who know of our humble beginnings may remember Marilyn Simon-Gersuk, who helped us in those early days and continued as an OMF volunteer since 2013.

Marilyn’s nonprofit fundraising and communications experience spans three decades. During her career, she has led development, communications, and operations for a variety of organizations, ones that focus on developmentally disabled adults, seniors, ALS research, and community-based social service providers. She has worked for local, regional, and national organizations. She has also served as a community builder, advocate, and committed volunteer.

Please welcome Marilyn as our first Director of Communications & Development.

Got Questions? We Have Answers

You’ve got lots of questions, so we’ve added a brand new section to our website! We’re grateful to our dedicated patient volunteers who helped to create this.

Some of the questions included are:

• How far along are your studies?
• How soon can we expect diagnostic tests and effective therapies from this work?
• Will you share your data?

We’ve grouped them into six categories, covering our foundation, our funding and costs, the diseases we research, and, of course, the research itself, with general information, more specific information on the scientists and the research, and what patients can expect from it.

So, please visit our FAQ-Frequently Asked Questions new page. We’re keen to tell you all about what we’re doing!

Follow our Phoenix Rising official thread

by Ben Howell, OMF Correspondent

Ben Howell has generously offered to run an official thread on the Phoenix Rising forum as our OMF Correspondent, so that we can streamline information directly to you.

Thank you Ben, from all of us at OMF for your time, dedication and tremendous efforts to keep everyone informed! Thank you to Phoenix Rising for enabling us to use their great forum.

At the end of the post, Ben will run a Q and A so that you have an opportunity to raise questions and concerns pertaining to what OMF is specifically doing. We may not be able to answer all of your questions, but we will do the best that we can to keep you as informed of our progress as we can.

Special Fun Thank Yous!

Thank you to all who donated and participated in the inaugural Undies On The Outside
campaign. This campaign, inspired by our friends in the UK and Australia, brought new attention to ME / CFS worldwide. Undies On The Outside was a fun and silly expression that brought people together around the globe to show off the superhero that they are, all coming together to End ME / CFS. Thank you to all of OMF’s new superheroes!

The Undies on the Outside campaign generated over $12,000. The funds raised are supporting our robust End ME / CFS research efforts. With multiple studies currently under way, we feel confident that we are fast tracking answers to help the ME / CFS community.

Please continue to share your smile and messages of hope for our patients and families.

Send your Happy Birthday wishes to Dr. Ron Davis

OMF is proud to honor Dr. Ron Davis as he celebrated his 75th Birthday. Tributes are being collected from around the world. If you would like to contribute to OMF’s research and add your personal birthday message to Dr. Davis, please click here (before July 26th). We will put all of your wishes on a birthday card for Dr. Davis!

Davis’s Speech at Invest in ME Conference Caused a Buzz

Dr. Ron Davis gave a speech at the IiME June conference in London that led to lots of online talk and social media sharing.

You can read more about it in Simon Grath’s summary of conference tweets on #MEAction. (Thank you for allowing us to repost.)

A New Platform for Experts to Speak to You

Recently, we have had experts want to speak more directly with you about our research. You may have noticed these in emails or in our newsletter.

We now have a place on our website where you can read their messages to you in their own words.

We call it the “Experts’ Blog.” In addition to the three posts there now, we look forward to receiving more of these expert-to-OMF-supporters communications and will put them in this blog. No middle man. They are working hard for you, and they have something to say. Read it for yourself.

See “Suggestions to NIH on Needed ME / CFS Research Strategies-by Ronald W. Davis, PhD”

OpenMedicine Foundation
Tax ID: 26-4712664

Our Mission:

• To support collaborative medical research to find effective treatments and diagnostic markers.
• To communicate, engage and inform the patient community.
• To help drive & support scientific meetings for continued global collaboration.

A Word from our CEO/President:

I am grateful to our fantastic volunteers that help us every day with writing, posting, creating, and giving ideas. I am overwelmed and overjoyed at so many offers to help.

We could not do this research without patients willing to give of their time and energy as well as blood, sweat and tears, for the purpose of finding answers to help others. We are forever grateful and thank you sincerely.

We are updating our website and newsletter formatting.
We hope that you like it.

We are extremely grateful to our supporters and donors, members of our remarkable scientific advisory and foundation boards, and our dedicated volunteers who are making this urgent research a reality. Our plan is to be open with results, share the data, collaborate and encourage research on a global scale. Thank you all for reading our newsletter and being a part of the solution.

With hope, Linda
Linda Tannenbaum, CEO/President
Open Medicine Foundation
www.openmedicinefoundation.org
Linda@OpenMedicineFoundation.org
Collaborating scientific research to
fast track answers, treatments & cures.

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