CSF Goes to Washington
By Lory Watson
The summer might be winding down for most, but late July proved to be a very exciting time for CSF. On Tuesday, July 21, Executive Director Dorothy Poppe along with board members and co-founders Paul Farrell and Lory Watson headed to the capitol city to put some long-discussed plans into action.
Our first stop was the National Institutes of Health (NIH). There, the three of us had the pleasure of meeting Dr. Robert Riddle and Dr. Naomi Kleitman, both of whom work in the National Institute of Neurological Disorders and Stroke (NINDS) in the Neuroscience Center. Dr. Riddle is the Program Director for the Neurogenetics Cluster and Dr. Naomi Kleitman is the Program Director of Repair and Plasticity. Our two hour-long meeting provided some much needed education for us and gave us some great ideas as 
to how we might be able to compete for the limited funds that are available. We were also able to extend an invite to them to attend our 2010 “Think Tank” Strategic plan meeting in Philadelphia in May 2010 to foster research agendas and provide a forum for collaboration. The Fiscal Year (FY) 2009 budget for (NINDS) is $1,545,397,000 and CSF hopes to direct a small portion for research initiatives directed at Chiari malformation, syringomyelia and related disorders. We will be working with our Medical Research Board to put together possible study ideas prior to approaching NINDS again. We will keep you posted on our progress.
That same day, our dinner plans included co-hosting our first of many educational meetings in the DC area. These free education and awareness meetings, which act like mini-conferences, are designed to educate and inspire physicians and patients about CM and SM and encourage them to become advocates for CSF in their peer groups. Dr. Frazier Henderson, Chief of Neurosurgery at Doctors Community Hospital in Lanham, MD, was the gracious host of the event. He, along with Scott Gregerson, Vice President of Strategy and Development at Doctors Community Hospital and our CSF chapter 
representatives in the DC area, pulled together approximately 50 healthcare professionals, patients and activists for a lively 3-hour meeting. Attendees not only learned details about CM and SM from Dr. Fraser Henderson Sr., Dr. Robert Gerwin, and Dr. Alexander Mark, in addition, they also learned about CSF and our goals with respect to these conditions. It was a great end to a busy day. The feedback we received was fantastic and we look forward to meeting up with Dr. Henderson on October 13th for an even more spectacular event.
The next morning, after saying goodbye to Paul, Lory and Dorothy were thrilled to represent CSF as members of the Christopher and Dana Reeve Paralysis Task Force at their think tank meeting in southwest DC. The two-day meeting, which included about 110 people from across the US, was designed to discuss issues pertaining to the quality of life of paralyzed people and how best individuals, corporations and governments might be inspired to 
help meet their needs. Topics such as care-giving, health promotion, multicultural outreach and surveillance were all discussed in-depth. It was a great opportunity for CSF to include their specific concerns and needs in the discussion as well as for CSF to network with organizations similar to ours. One of the goals of CSF is to partner with like organizations so we can realize the benefits of pooling our knowledge and our resources to accomplish shared goals.
All in all, our first trip to Washington was a great success. If you are interested in becoming a part of our lobbying committee and helping us to further our reach into the “belly of the beast”, please contact us. We need your help.
