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OMF’s End ME/CFS Worldwide Tour: IiME Conference – Patient Day – June

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By Linda Tannenbaum

I have been attending the IiME Conference for four years. Each year, one of the highlights of the Conference is the Patient Day. This is the day when new and old friends come together and feel the support and strength of our community. Each year I am inspired by the commitment and resolve of the parents. We will never stop until we have found a cure for our children. That is a pledge we all have made to each other.
 
Joined by our Scientific Advisory Board Director Ron Davis, Raeka Aiyar (Communications Director at the Stanford Genome Technology Center), and Ashley Haugen (Events and Marketing Director at SGTC), we hosted an OMF sponsored table to greet friends from 20 countries around the world. During the day, we had time for chats and hugs.  I was thrilled to meet leaders from Spain and Italy and so many more. 

It was wonderful to see Jen Brea and her husband, Omar Wasow.  Ron Davis and Jen had their  first chance to reconnect since we were all together at Sundance last February for the premiere of Jen’s documentary, Unrest. They both had so much to share with each other.
 
The day was filled with outstanding talks and presentations. The closing speaker for the Patient Day was Ron Davis. He delivered a very powerful and informative talk, presenting new ideas and concepts that the whole community should be applying to ME/CFS, while also sharing the latest results of his research. For our Phoenix Rising followers, Ron did a special shout-out to our OMF Correspondent, Ben Howell, who unfortunately could not attend the conference. Ben is helping to share our Worldwide Tour journey on Phoenix Rising. Ben is a tremendous supporter of OMF and has a very special place in the Davis/Dafoe family.
 
By all accounts, Ron’s talk on why a molecular approach to ME/CFS is key for our goal of better understanding and treatment of ME/CFS, gave everyone in attendance a great deal of hope for a brighter tomorrow. “ME/CFS is an invisible illness and I’ll do anything to make it visible,” he said.
 
As a personal and enjoyable way of sharing the news from the conference, as well as a glimpse into his own research, Ron took a few minutes at the conference to record a brief video that we will share through OMF’s e-news. If you are not already receiving our news in your personal mailbox, please visit our website and register. Keeping you informed with open and collaborative information is my goal.  
 
As I prepare to say good-bye to London, I am reminded of the importance of each and every day. I am grateful that our conference attendees were not hurt by the senseless violence in the city. My heart goes out to those families who have suffered the loss or injury of a loved one. We are reminded: each day is precious. Make the most of it!
 
With hope for all,
 
Linda

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