Fellow ME/CFS, FM, Lyme Leaders Urgent Request to Help Win Federal Funds Open Medicine Foundation-Linda Tannenbaum [email protected] Dear Fellow Organization & Group Leaders, We are doing a big push to apply to a PCORI (Patient Centered Outcomes Research Institute) Grant to gather large amounts of data to study Neuro-Immune Diseases (ME/CFS, Fibromyalgia, Lyme, MCS, MS) and need to have as many prospective organization leaders to sign up as possible to win the grant. The Open Medicine Foundation can secure this grant with your help and the Open Medicine Institute has the platform to gather this data! More info can be found below and at pcori.org . We need at least 100,000 prospective patients for this application, the more the better. We have about 70,000 already! Thank you to those of you that have signed on already! Could you please sign on and/or share with other organizations that you know of so that we can all do this together! This is an easy way we can engage ourselves and our patient community friends to be a part of the solution! Easy steps... Please reply or copy and paste below Yes, I am in support of the PCORI grant Name: Title:(Leader, President, CEO, other?) Organization or Group name: Email address: Country: Number of facebook followers/email members (estimate): Sign up as a supporter of this by replying yes on this email. This is a great way for you and your members to help and engage in research. There is no cost or obligation to you or any patients and lots of reasons to reply yes to this today. Action: As a leader of a patient Group or patient Organization, please reply via Email that you are in support of this, with your own name, title for group, organization name and approximate number of members in your group. As leaders, nothing else needs to be done; if we win the grant, you will only have to send out emails to your members asking them if they are interested to be part of this data gathering project (all privacy rules applied). We will write the emails and you can just send them out. The Open Medicine Foundation will do all work that needs to be done on applying for the grant. The Open Medicine Institute will use their OpenMedNet platform once the grant is secured. The Open Medicine Foundation will be in charge of governance. We win by the numbers prospective people in our network and our ability to be able to do this research (the Open Medicine Institute is positioned to do this privacy controlled-data-gathering research immediately with the OpenMedNet platform). We will be applying against all other illnesses and we want to stand up and stand out! The Federally funded Grant, deadline June 19th, is a great opportunity to show that we have enough patients wanting to work together to help ourselves and each other. No down side, all upside. Please email me or call with any questions that you may have. Time is limited so please reply today so that I know that I have enough support to pursue this. Thank you very much for helping everyone! All the best in health to all, Linda Linda Tannenbaum Executive Director [email protected] Open Medicine Foundation openmedicineinstitute.org 650-352-0310
Posted on: Tue, 11 Jun 2013 04:22:38 +0000
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