Driven By Passion; Guided By Purpose

From the Chairman’s Desk
April 2012

Those of us who have had the privilege to serve the Association and the community as volunteers on the Board of Directors do so out of a passionate commitment to solve CFS. Each of us on the Board either is a patient or has a loved one who is a patient. Each of us shares the community’s desire for clear answers and for treatments that help patients.

Members of the 2012 Board (left to right): Beth Garfield, Chris Williams, Diane Bean, Kevin Frick, Patrick Venetucci, Vicki Boies, Amy Squires and Kim McCleary. Not pictured: Amy Divine, Adam Lesser and Bob Raidt.

As individuals and as a group, the Board has never been more excited about the organization’s work than it is today. The Research Institute Without Walls represents a different way of working to accelerate the answers that will change patients’ lives. Business as usual in research doesn’t always work well for patients: the incentives and barriers in the system make it a slow, hard, frequently random process with no guarantee of results. The Association’s approach with the Research Institute Without Walls systematically tears down each of those old walls, one by one.

• It forces scientists to collaborate across disciplines, so that new insights are created. For example, the grant to Dr. Dane Cook is a collaboration arising from our 2009-10 grants.  

• It requires information sharing on a common platform, so that approved researchers can access information and make constructive use of it.  

• It promotes the use of standard sampling methods and data standards, so that study findings “speak the same language” and are more comparable, better understood and more readily replicated.  

• It harvests assets of the SolveCFS BioBank, a wealth of information and samples collected from well-characterized (rather than simply labeled) patients and healthy controls, so that researchers can test new hypotheses (like Dr. Patrick McGowan will do) and validate past findings (like Dr. Leonard Jason will do).  

• It reflects projects chosen for strategic merit, not just scientific merit. Our intent is to drive progress toward disease-modifying treatment, rather than allowing the science to simply drift.  

• It will leverage the powerful data mining system, LogosOmix, to scour the existing research literature to identify potential biomarkers to direct future research.

We on the Board are thrilled to be breaking ground with you. Thank you for joining us in making this Research Institute Without Walls a reality.

Amy Squires
Chairman, Board of Directors

Amy Squires has served on the Association’s Board of Directors since 2007. Her passion for the cause is driven by concern for her sister and close friends who have been debilitated to varying degrees by CFS. Her professional background is in public administration and public policy; she has worked at the federal Office of Management and Budget and as a consultant to numerous federal and state agencies. Amy is the seventh person to chair the Association’s board and she is one of 88 volunteers to serve on the Board since the organization’s founding in 1987.

Share and Enjoy:

• 
• 
• 
• 
• 
• 

• 
• 
• 
• 
• 
• 
• 
• 
• 
• 
• 
•