"Passing the Torch"
For the fifth time in the Association’s 22-year history, a new chairman will lead the Board of Directors beginning on January 1, 2010. Here outgoing chairman Jennie Spotila, J.D. and incoming chairman Adam Lesser share their thoughts about what motivates them as volunteer leaders.
From Jennie Spotila, J.D.
Chairman of the Board of Directors, 2008 and 2009
The first book I read about chronic fatigue syndrome was Running on Empty by Dr. Katrina Berne, a current member of the Association’s Board of Directors. At the time, in 1994, I was scared. No one, including my doctors, could tell me why I was so ill and why I was not getting better. As I sank into the quicksand of CFS, it was the CFIDS Association that became my lifeline to information and to hope. Fifteen years later, I am still disabled and housebound, but I am not scared anymore. Working with the Association is my way to fight back against CFS.
Members of our Board sacrifice their time and energy (both in short supply) to serve. We don’t do it for money or to add prestige to our resumes. Every member of the Board makes this sacrifice because of the people we love: spouses, children, siblings, and friends. My husband deserves a healthy life partner; my parents deserve grandchildren. I serve on the Association’s Board because no one should have to endure the suffering that CFS brings. I firmly believe that CFS is a solvable problem, if we can just find the way.
It has been my privilege to serve as the Chairman of the Board of Directors for two years. I am too ill to continue in this role, but my commitment to the Association is stronger than ever before. There is much work ahead, but we can – and will – Solve CFS.
From Adam Lesser
Chairman of the Board of Directors, 2010
I guess it all started in the newsroom. Sitting at the superdesk, NBC’s giant newsroom that coordinates news coverage for all of the NBC News outlets—from MSNBC to the Today Show—I felt the first pangs of what I thought was food poisoning. A year later, fifteen pounds lighter and in shock from the repeated nights of non-restorative sleep and muscle exhaustion, I resigned from my position as assignment editor. I was too sick to work.
In the years that followed, I searched for answers. Went from doctor to doctor. From acupuncturist to nutritionist to naturopath. With my frustrations growing, I booked a flight to Washington D.C. and attended Lobby Day for an organization claiming to represent the interests of those with CFS. It was during that long day walking through the Capitol, reminding our government that it must do more, that I met the dedicated staff of the CFIDS Association.
I soon saw that the CFIDS Association had all the traits I was looking for. Low overhead, a mission focused on public policy advocacy and scientific research, the experience and connections necessary to make progress. Which is all very important to me. Because as I go out and ask our generous donors for their continued support, I do so with a clear head—I believe the best thing that CFS patients and their loved ones can do to better their situation is to invest in our efforts both to build a network of talented and engaged CFS researchers and to increase the federal investment in CFS research through advocacy.
As I step into the big shoes Jennie has left me to fill, I remind myself that each decision the CFIDS Association makes impacts the lives of everyone with CFS. And that’s what keeps me going—the belief that one day we will get there. One day CFS will be diagnosable, treatable, and curable.
Association Chairmen of the Board:
1987-2000: Marc Iverson, MBA, Founder
2001-2004: Jonathan Sterling
2004: John Trussler
2005-2007: Susan Jacobs, Esq.
2008-2009: Jennifer Spotila, J.D.
2010: Adam Lesser
The Board elects a chairman (and other officers) each fall for the coming year. The chairman is limited to three consecutive years of service, but may continue serving on the Board for a maximum of six consecutive years of service. These provisions for orderly succession follow best practices recommended by BoardSource, Independent Sector and other nonprofit advisory organizations.
CFIDSLink is offered free-of-charge to anyone who requests it. Please help us continue being able to provide this service. Donate now.