2010 Letter from the Chairman

Farrell_1.jpg With the holiday season upon us, we take the opportunity to reflect on what an extraordinary year 2010 was for the Chiari & Syringomyelia Foundation. Thanks to you and your generous gifts, we accomplished many of the goals we set for 2010, established many new and exciting events, and have set our sights on a productive and eventful 2011. I’d like to update you on the progress we made this year.

Regarding our fundraising efforts, our signature events continue to provide the much needed revenue for our regional education and awareness programs, even in these difficult economic times. Your generosity and support is inspiring has made our progress possible!

Our third annual Charity Ball, held on March 13, in Staten Island, New York, was a huge success, and on September 12, our third Race for the Cure at the Arlington Park Race Course near Chicago generated more excitement, awareness and funds. These two events raised over $280,000. 2010 also marked the second year that Board of Directors member Jim Feisthamel and his wife Mary Ellen have hosted the CSF Valentine’s Day Dinner Dance in Utica on February 13. The Utica Chapter’s, Kathe Pianella and Jerry Hitchcock hosted a dinner fundraiser in October, raising over $6,000 and Cathy Poznik, CSF Board member and Chapter Coordinator, organized and hosted the third Cleveland Hour of Hope Fundraiser, which raised over $12,000 for CSF.

CSF_2010_Night_of_Light_Childrens_Gala.jpg We are also extremely proud of our newest and most ambitious event, the Night of Light Children’s Gala, held this past November in Washington, DC, which was a huge success. This magical evening included a royal guest list, international ambassadors, world-class physicians who treat Chiari and syringomyelia, and 100 philanthropic guests from around the world. We were most fortunate to have a distinguished group of patrons, including Nicholas, 14th Lord Fairfax of Cameron, Lord and Lady Malloch-Brown, The Honorable Christopher Burnham, and Mr. Randy Theken, whose presence made for an extraordinary evening. The money raised from this event will help directly fund our most ambitious research project to date, The CSF Project to Analyze the Prevalence of Chiari Malformation within the Autism Spectrum Disorder Population. Please click on the Night of Light page on our site to view photos of this wonderful event.

Our Strategic Planning meetings in 2009 and 2010 have truly paid off.

At the end of last year, I talked about our “wish list” which included establishing CSF chapters across the country, and continuing to further our cause with the National Institutes of Health. I am pleased to report that we made exceptional progress on each of these goals.

CSF_chapters.jpg After the incorporation of our first four CSF chapters, located in Cleveland, Denver, Utica and Washington, DC, in 2009, I am very pleased to announce that we opened new chapters in 2010 in Seattle, WA and Raleigh-Durham, NC. Our Education and Awareness series continues to directly impact patients and families this year and included respected keynote speakers Dr. Allison Ashley-Koch, Dr. Ed Benzel, Dr. Judith Scheman, Dr. Ed Covington, Dr. Jan Dommerholt, Dr. Riad Dakheel, Dr. Robert Gerwin, Dr. Clare Francomano, and Dr. Richard Ellenbogen. CSF plans to continue opening additional Chapters throughout the country in 2011. For more information about our Chapter programs, visit our Chapter page.

CSF_2010_Hydrodynamics_Symposium.JPG In August, to continue spreading awareness, we were invited by Dr. Dominic Marino, member of CSF’s Medical Research Board, to attend the Hampton Classic Horse Show on Long Island, New York, to exhibit our corporate materials and to present information on Chiari malformation, syringomyelia, and CSF’s mission.

In addition to spreading awareness, research is a top priority for our organization and CSF is pleased to announce our sponsorship of the First Annual CSF Hydrodynamics Symposium in Zurich, Switzerland in July 2011. This sponsorship is made possible by a generous grant from the Monkton Institute. Under the guidance of CSF Medical Research Board member, Dr. Frank Loth, this engineering/physics symposium will be focused on the motion of cerebrospinal fluid. Approximately 20 to 30 invited speakers from around the world will present their research that involves either experiments or computational methods to better understand normal physiology and diseases related to CSF motion, such as Chiari malformation, syringomyelia and hydrocephalus.

CSF recently acted as a sponsor for Conquer Chiari’s 2010 Research Conference which was held in Chicago on November 11-12. This conference brought together top physicians and researchers involved with Chiari Malformation to share recent developments as well as collaborate for future care of this disorder. The sessions included a number of important and ground-breaking presentations that will hopefully lead to improvements in the treatment of Chiari malformation. A number of physicians from the CSF Medical Advisory Board participated and presented at this conference. CSF congratulates Rick Labuda and Conquer Chiari on this successful conference of which we were proud to be a sponsor.

2010-BobbyJonesClassic.jpg Finally, we continue to move forward and develop our plans for the Bobby Jones Classic for CSF, which has been re-scheduled for April 2012, due to the current state of the overall economy. This tournament is made possible with the blessing of the Jones family, in particular Board of Trustees member Bob Jones IV, grandson of the legendary golfer. Please continue to visit our website for important updates on this groundbreaking event.

It’s been quite a productive year, as we continue to build a solid foundation and set our course for the future. Join the CSF community and stay up-to-date on upcoming news and events with periodic email updates. Just click on Sign Up Now on the left side of our site, add or update all of your information, to receive these the CSF eNewsletters.

Please consider making a tax deductible contribution to CSF by donating online. Just click the Donate Online button and fill out the form. If you prefer to mail your gift, please send to:

Chiari & Syringomyelia Foundation, 69-39 Yellowstone Blvd. #216, Forest Hills, NY 11375

Thank you so much for your support of CSF! Have a healthy & happy New Year!

Paul J. Farrell, Chairman

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