“One and Done” No More!

From the CEO’s Desk
December 2011

I had the pleasure of spending Monday evening with supporters of our Catalyst Fund in the home of one of our board members, Vicki Boies, and her husband, Bill. A thousand miles away, my colleague, Suzanne Vernon, PhD, was in the home of another one of our directors, Amy Divine, speaking to another group of Catalysts. Neither of us had a script or even a PowerPoint presentation to lend structure to the conversations, but after four years of honing a new approach to research, we didn’t need notes to describe what we do every day to advance progress.

The next day, we checked in with each other to see how our respective evenings had gone. “What resonated most with your group?” We had the same answer to share: “They really liked that the days of supporting ‘one and done’ studies were over.” We both found a lot of excitement for the way in which the Association had used scientific and strategic criteria to make its awards, networked its funded investigators, built the SolveCFS BioBank infrastructure, used the published literature to develop a CFS knowledge base, collaborated with others and kept its program humming amidst a lot of potential distractions. Our guests were thrilled with the 7-to-1 “return” on studies funded, as measured by new grants secured by those investigators from other funding sources. And they were fully committed to helping us take the next step to transform the way that CFS research is done.

It’s not possible for either (or both) of us to share this news in the living room of every person who relies on the CFIDS Association for transformative research and credible, current research information, so we’ve tried to make our Research1st site as much of a “home” for that information as possible. Last week we posted 10 new articles describing the outcomes of our last round of grant funding and blueprints for what’s coming next. We hope you’ll check out all the articles linked from the first of those posts, or at least the slideshow that summarizes our progress and plans.

One of the other things that people enjoyed about the two gatherings was the opportunity to meet one another. That’s harder to replicate online, but we’ve introduced a dozen Catalysts — Jeff, Melissa, Claire, Claudia, Denise (and her sons Matthew and Alexander), Anne, Lynn, Dikoma, Michael and Amy – whom we hope you’ll take time to meet by reading their profiles. My colleague Sara Collins has enjoyed talking with supporters about their hopes for the Catalyst Fund and she’s working on more profiles to come!

One of the great announcements Suzanne and I were able to share on Monday evening was that we had just secured the $40,000 challenge match from the McGrath Family Foundation. During the two-week period that began on Nov. 23, we sought $20,000 in online donations in order to secure the $40,000 pledge made. The contributions received actually exceeded that goal, with a total of $31,525! So this mini-campaign added a total of $71,525 to The Catalyst Fund. If you’re among those who had triple the impact by making a gift, a special thank-you!

We are still working hard to reach the larger campaign goal of $2 million, the funding we need to immediately act on the plans described in the article titled, “Looking to the Future.” At the heart of our plans are another round of high-impact grants, of which we are mid-way through the review for scientific and strategic merit. The number of grants we’re able to fund will, in part, be based on the amount of funds available. Right now, we stand at $589,718, not quite one-third of the way there. It’s an ambitious goal, but with your help, we are confident that it’s within reach. With the gathering momentum building in research, the timing has never been more critical.

To help attract gifts from individuals who haven’t ever made a gift to the Association, donor Lee Meisel, MD, JD, MPH, has offered a $10,000 “bonus” donation if we can attract 100 gifts of any size from first-time donors in the next 10 days. So, if you value the information you receive through CFIDSLink (our monthly e-newsletter), Research1st (our website and blog), Facebook, Twitter or by any other means, but you haven’t ever donated, now is the time to do it! If you’re already a supporter, please share this opportunity with family and friends who might consider donating in your honor. We’ll gratefully acknowledge you both! We’ve added a new check-box to our on-line donation form and we’ll also check all donations as they’re received to keep the first-time gift tally up-to-date.

We recognize that the toll CFS exacts is more than physical, that most people experience some, and sometimes severe, financial consequences, too. One of the most difficult responsibilities I have is to ask people for money, knowing that sometimes my message will reach people who are barely able to cover the basics, or must rely on the generosity of others to meet essential expenses. If you are in those circumstances, please do not allow our request for support to add to your already heavy burden. We work on your behalf.

However you are able to express it, we are grateful for the support of so many people who have contributed in many different ways to the life of this organization over its nearly 25 years. This is a vibrant, resilient community and I feel fortunate to be a part of it, especially at such a momentous time of opportunity. Thank you for your generous participation.

Gifts of every size are needed to reach the ambitious $2 million goal. The CFIDS Association of America is a tax-exempt 501(c)(3) charitable organization and donations are tax-deductible to the full extent allowed by law. You can make a secure online donation at http://bit.ly/2011fund or call 704-365-2343 (if no one is available to take your call, please leave a message and your call will be returned on the next business day).

Share and Enjoy:

• 
• 
• 
• 
• 
• 

• 
• 
• 
• 
• 
• 
• 
• 
• 
• 
• 
•