2008 Letter from the Chairman

Chairman's Update

CSF was founded in October 2007 by a group of dedicated and exceptionally committed people who wanted to see our vision of finding a cure for CM and SM become a reality. I'd like to update you on the progress we've made in 2008, in such a short period of time.

In January 2008, we held our first Board of Directors meeting in Chicago. In March, we went to Dallas for our first Board of Trustees meeting and in April we held our first meeting of our Medical Research Board in Chicago. We also held our first strategic planning meeting in Chicago in early August. The significance of all these meetings is that we are committed to our goal, and almost everyone on these Boards has made the effort to meet face-to-face to set our course as a new organization with a three year strategic plan. To my knowledge, we are one of the very few, if not the only, CM/SM organization that places such an importance on the value of meeting face-to-face to ensure that our goals will be met.

Our first annual Charity Ball, held on April 5th in Staten Island, New York, was a huge success, and on September 7th, our first "Race For The Cure" at the Arlington Park Race Course near Chicago generated more excitement, awareness and funds with a landmark crowd of 350 people. These two events raised over $315,000. September also marked our first "Conquer for Kaya" CSF Golf Tournament in San Antonio, Texas and raised over $36,000 for research.

Our Education & Awareness Programs are starting in Tennessee, Virginia Beach, Seattle, Denver, and Twinsburg, Ohio. Our Twinsburg fundraising event was held in October, and our Denver fundraising event will take place in February 2009. We also expect to announce before the end of the year the incorporation of our first two CSF chapters, to be located in Cleveland and Denver.

In addition, we are both excited and very proud to announce the launching of the Marcy Carlson Speer Research Endowment, which has a goal of raising $5 million over the next five years. The Endowment has the support of the Carlson family and the Duke University Genetics Department, to help make this Endowment a reality.

Finally, we are currently filming a new set of nine educational and informational videos, which were made possible by a very generous gift from the Jordan Family Foundation, through Mr. Burt Jordan, who is a member of our Board of Trustees.

So it's been quite a busy year and we look forward to another busy and productive year in 2009! If you'd like to join the CSF community and receive periodic updates on news and upcoming events, click on Contact Us on the left hand side of this website, and we will add you to our contact list. This brings you up to speed on the progress made by CSF so far. Thank you so much for your support of CSF!

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Paul J. Farrell
Chairman and Founding Member

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