From the CEO’s Desk: October 2011
By K. Kimberly McCleary
In 2008, the CFIDS Association launched the Campaign to Accelerate CFS Research with a $1 million fundraising goal and ambitious plans to fuel a more intensive search for answers. Our supporters responded and we went to work.
One of the keystones of our expanded research program was the group of six grants selected for top scientific and strategic merit. We networked the investigators and our scientific director Suzanne Vernon, PhD, worked closely with them. Their projects are now complete and the $647,940 in seed funding and close collaboration has already yielded nearly $5 million in new government awards for CFS research. In other words, for every dollar we funded in grants, follow-on investments have already yielded nearly 7 times the original invested amount! This is important not just for the studies it advances, but also to attract new researchers to field. The opportunity to work in a fundable area of science is crucial to research careers and to building a critical mass of talented minds at work on CFS.
Our most recent Request for Applications attracted full applications from 26 research teams from four countries. The budgets of the projects aimed at advancing objective diagnosis and effective treatment total $2,550,242. The rigorous process of reviewing those applications for scientific soundness and strategic merit has begun and we’ve enlisted 36 scientists from a wide range of disciplines to assist in that process. Few organizations of our size conduct such a thorough review, but it paid big dividends in the decisions made in 2008 and we are committed to following the most promising science. The number of meritorious grants that we will be able to support at the conclusion of our three-phased review will depend largely on the funds available, through your generosity.
Other outcomes of our efforts are important too. We have documented them in summer-fall issue of our print publication, SolveCFS, mailed to supporters two weeks ago.* Later this month we will post the articles here on Research1st; you can read now about the Lights’ $1 million NIH grant and the work being done by Dikoma Shungu in collaboration with Benjamin Natelson, M.D. to explore neurological abnormalities with new funding from NIH. We’ll have more news to share as other funding awards and publications are announced. The return on our supporters’ investments will continue to improve!
Even so, we’re not satisfied. The urgent need for better diagnostics and treatments must be met. We are positioned to leverage and lead the kind of collaborative research that will unlock the mysteries of CFS at the molecular, cellular and clinical levels. We are ready to transform the way that CFS research is done so that answers – not just grant dollars and publications – flow from our collective efforts.
We have set a fundraising goal of $2 million to invest immediately in the best scientific opportunities arising from our latest review of proposals; to expand the SolveCFS BioBank; and to generate and pursue leads from a biomarker hit list and enhanced collaborations. You’ll hear more about these initiatives in the weeks to come.
We invite you to help us speed progress by joining theCatalystfund. Gifts of any size will help us reach our $2 million goal. A special matching grant established by two donor families will match gifts received by Dec. 31, 2011, so your gift (of up to $10,000) is automatically doubled! We can also help you with outreach to encourage friends, families and support group members to make a joint gift in support of theCatalystfund. Special Catalyst-only events (in person and via the web) will enable you to hear directly from Association leaders and researchers about advances your gifts make possible.
Within days of sharing the news of the creation of theCatalystfund with just a few of our most enthusiastic supporters, a rapid reaction was generated and gifts totaling just over $200,000 were provided to speed the Fund’s growth. That’s the power of catalytic action! Please let us hear from you today with your gift or pledge so you are kept up-to-date on the latest developments. You can make a secure online donation at http://bit.ly/nvw6jz.
The past year has been the most vigorous period in the history of the CFS community. Nearly every week has brought a new research publication, media attention from a major outlet, or another new development. The possibility of XMRV as a causative agent of CFS raised hopes – and expectations – for a shortcut to validation, diagnosis and treatment. Some people hit the “pause” button on other avenues of research while groups around the world set out to validate this finding. While staying closely engaged in that important research, we kept pushing forward in other areas to ensure progress didn’t hinge on a single hypothesis. We share the deep disappointment that the initial data did not hold up, yet we are convinced that there are many other solid leads that merit the same rigorous follow-up. XMRV has attracted new attention and engagement that we’re determined to translate into sustainable progress and better care.
Only with your support can we transform CFS research and make the disease itself history. Thank you for your interest and investment in our organization. Please help us see our shared mission through to the end. Now is the time!
The CFIDS Association of America
For CFS to be widely understood, diagnosable, curable and preventable.
To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.
Our Core Values:
To lead with integrity, innovation and purpose.
* To receive a complimentary copy of SolveCFS by mail, simply send your name and mailing address to firstname.lastname@example.org with “SOLVECFS” in the subject line.
K. Kimberly McCleary has served as the Association’s chief staff executive since 1991.