ONE MINUTE ADVOCACY #2: Please sign this card for the VMware Foundation!http://www.groupcard.com/c/ZjA2X_lwClv AND AN UPDATE: Feedback on the Edward P. Evans Foundation’s card of thanks! Recently we asked you to sign a Thank You card for the Edward P..Evans Foundation, for its grant to the Open Medicine Foundation on genomic research in the constellation of ME/CFS diseases. As of today, we have 125 signatures from around the world, from countries including Australia, Belgium, Canada, England, France, Germany, Ireland, New Zealand, Scotland, the Netherlands, Wales, and of course from all over the USA. Thank you! What really came through in the comments on the card was: - How desperately we need research into the constellation of ME/CFS diseases - How devastating these diseases are – many people wrote of decades of debilitation, and profound losses and medical neglect - The huge impact of ME/CFS on not only patients, but also loved ones - How enormously patients appreciate philanthropic support of ME/CFS research; and - That ME/CFS philanthropy gives HOPE to patients from around the world. You can see the card here: http://www.groupcard.com/c/8W9nORILuaR/ol. It’s a compelling read. Why “Thank-Yous” from the international patient community are so important Philanthropists like to know that their money is being well spent; and that it has meaningful and far-reaching impact. Your comments beautifully highlighted that achievement! We thought you would like to know the immediate impact this card has had. Linda Tannenbaum, Executive Director of the Open Medicine Foundation just shared the following note from the Edward P. Evans Foundation’s Executive Director: What the Edward Evans Foundation said about the card "It was so wonderful and heartwarming to read the comments. It made me feel great... The genome sequencing project will be such an important piece of science and I am hopeful it will illuminate many areas for future research. I’ve shared the card with the board and am so overwhelmed by the wonderful gesture. PS – We updated our website to show the OMI project, yay!www.epefoundation.org So in philanthropic terms, investment in ME/CFS gives a very meaningful and rewarding return! In as little as a minute, patients around the world helped increase name brand recognition of ME/CFS and of the Open Medicine Institute. And patients increased the chances that our philanthropists will give again – or that they will tell their philanthropic friends of the urgent need, for support of the neuro-immune community and of the groundbreaking research efforts of the Open Medicine Institute and the OMI-Merit collaboration, on our behalf. In other words, this is one area where seriously ill patients – with relatively little effort – can make a difference! A patient has arranged to have a poster or flip book version of the card made, so that the donating foundations can permanently display the thanks – a positive and visible way of showing that they are making a difference. Invitation to invest another minute: Thank-you card for the VMware Foundation As you may have heard this week, the Wall Street Journal (http://online.wsj.com/article/PR-CO-20130514-907780.html?mod=googlenews_wsj), and the Open Medicine Foundation (http://openmedicineinstitute.org/news-events/press-releases/vmware ), announced yet another substantial fundraising success for the ME/CFS community. The VMware Foundation has provided an exciting grant of financial and consulting support, which will enable the Open Medicine Institute to build a world-class information technology platform to support Personalized Medicine for complex neuro-immune diseases such as the ME/CFS constellation of diseases. Personalized Medicine is all about understanding disease at the molecular level, such as the unique proteins, produced by each of our individual genetic codes, which might serve as therapeutic targets for drugs to treat. Why is information technology support, such as the VMware grant, vital to our search for treatments and a cure for ME/CFS? It should be apparent by now that we need the collaboration of many disciplines in order to understand and effectively treat these complex multisystem diseases. At the recent FDA workshop on accelerating drug development for ME/CFS (http://www.fda.gov/Drugs/NewsEvents/ucm319188.htm ), our community was urged to develop knowledge infrastructure such as documentation of the Natural History of these diseases, shared Bio-banks and Open-Source data - or data that can be freely shared around the world. It will take robust computing power, and the power of many bright minds in ME/CFS research and clinical practice, to crack these diseases. Indeed, one FDA workshop speaker stated, “This condition is probably one of the greatest intellectual challenges in medicine”. The Open Medicine Institute is uniquely positioned to take this process several steps further by also integrating genomics, or the molecular fingerprints of disease (supported by the Edward P. Evans Foundation’s grant), the clinical expertise of world leaders in ME/CFS (represented in the OMI-MERIT signators here http://openmedicineinstitute.org/research-initiatives/mecfs-merit ), and the social networking and IT strengths of Silicon Valley, represented in the VMware grant. This grant will enable the Open Medicine Institute to collect, share, and analyze thousands of data points on ME/CFS clinical findings. A powerful “Open-Source” IT platform, will enable seamless sharing of patient data (compliant with HIIPA, and with patient consent) with the many international signators of the OMI-MERIT research consortium. It will enable researchers to map out the molecular changes in “responders” to treatments vs non-responders, and ultimately to know in advance which patients will be likely to respond to which treatments; the essence of Personalized Medicine. VMware, a global IT expert in cloud computing, is abundantly qualified to develop a cutting edge technology platform that will leverage this mountain of patient data, and the brainpower of ME/CFS researchers around the world. For patients, what matters is that research be translated swiftly into effective treatments. For diseases as complex as ME/CFS, we will heavily depend on IT support to translate huge amounts of data into actionable information. And for this reason we are indebted to the VMware Foundation for helping make sense of this complexity. As the Open Medicine Foundation commented in its press release on the VMware grant: “By integrating an open-source platform, clinical expertise, global scientific research, genomics and the benefits of social networking, OMI is advancing the understanding of neuro-immune and other complex diseases including: Autism, Myalgic Encephalomyelitis/Chronic Fatigue, Lyme, Multiple Sclerosis and Parkinson’s.” How you can help: Please Take 1 minute to sign the VMware Thank You Card! Here is another opportunity to give thanks – and increase awareness of the desperate need for research into ME/CFS diseases. Please sign the Thank You card to the VMware Foundation here: (http://www.groupcard.com/c/ZjA2X_lwClv ). The card will be available until Friday, May 24th. Note: This update has been submitted by a patient, with the permission of Linda Tannenbaum, Executive Director of the Open Medicine Foundation. Please feel free to copy and share this post in its entirety.