2011 Letter from the Chairman

As a new year begins, we can reflect on the extraordinary accomplishments achieved in 2011 by the Chiari & Syringomyelia Foundation. Thanks to you and your generous gifts, CSF attained many of the short term goals we set for 2011, and we have laid the groundwork for many new and exciting long term projects. I’d like to update you on the progress we made in 2011, as we look forward to an exciting and productive 2012.

Regarding our fundraising efforts, we have exceeded our expectations with several new events that have supplemented our annual signature events. These events provide us with the needed revenue to continue on to our goals, even in these difficult economic times. Your continued generosity and support inspires and drives us to reach our ultimate goal, to find the cure for Chiari malformation (CM), syringomyelia (SM), and related disorders.

CSF_2011_Charity_Ball.JPG Our fourth annual Charity Ball, held on March 5, in Staten Island, New York, was a huge success, on February 12, our annual CSF Valentine’s Day Dinner Dance was held in Utica, NY and on August 27, the annual Ride for the Cure was held in Rome, NY.

We also introduced two new events this year. On September 17, our first Dinner Dance for a Cure was held in Twinsburg, OH, and on October 15, our first Taste for a Cure was held in Barrington Hills, IL at the Barrington Hills Country Club. The Dinner Dance for a Cure was attended by over 200 people and raised over $27,000. Scientific Education & Advisory Board (SEA Board) Chairman Dr. Edward C. Benzel and member Dr. Frank Loth were in attendance, along with speakers from the CSF physician lecture series - Dr. Mark Luciano and Dr. Violette Recinos. The Taste for a Cure featured wine tasting and gourmet food selections, was attended by 200 guests, and raised almost $150,000.

CSF_2011Night_of_Light_Childrens_Gala.jpg We also recently completed our most prestigious event, the second annual Night of Light Children’s Gala, held on November 12 at the James Burden Mansion in New York City. This magical evening was a huge success, and featured a distinguished group of honorees - U.S. Senator Lindsey Graham, Lord Nicholas, 14th Lord Fairfax of Cameron, and Ms. Edie Laquer, as well as world-class physicians who treat Chiari and syringomyelia, and 100 philanthropic guests from around the world. Lord Mark Malloch-Brown gave an impassioned keynote speech about how Chiari malformation affects an entire family. Last year, the money raised by this event was earmarked to help direct a research project, which will look into the connection between Chiari malformation and the Autism Spectrum of Disease. This year, we raised over $500,000 from the Night of Lights Children’s Gala, in part due to a generous gift from Dr. Steven Victor, Chairman of Intellicell Biosciences. This will help us fund the establishment of a National CM and SM Patient Registry, which will track the identification and diagnoses of people with these disorders, monitor their health, and set priorities for health care.

In 2011, CSF funded three meetings within the medical & scientific community. Current clinical studies have suggested that there exist specific relationships between Chiari and co-morbid disorders that would affect the surgical approach to Chiari. A CSF Colloquium in Washington, DC on October 1 focused on hypermobility connective tissue disorders and Chiari in an effort to expand the current knowledge about the co-morbid disorders that are associated with it. The meeting was recorded and will be available on our website shortly.

CSF_2011_Hydrodynamics_Symposium.jpg In an effort to “think outside the box”, twenty-five engineering and scientific speakers from around the world traveled to Switzerland this past July for a CSF sponsored international Hydrodynamics Symposium. The goal was to think about these disorders from a physiology perspective rather than just a clinical perspective. The Symposium was co-chaired by SEA Board member Dr. Frank Loth, and funded by CSF through a generous grant from the Monkton Institute. Plans are already in progress for the 2nd CSF International Hydrodynamics Symposium to be held in 2013.

The third meeting was in preparation for our grant announcement. CSF is proud to announce that we have released a call for research grant applications. There will be five $10,000 trainee grant awards and one $50,000 Bobby Jones Research Scholarship. It will be a very exciting year in research.

2011-BobbyJonesClassic.jpg Finally, the Bobby Jones Classic for CSF has been re-scheduled for May 14, 2012, at the East Lake Golf Club in Atlanta, GA. This tournament is only made possible with the blessing of the Jones family - in particular Board of Trustees member Bob Jones IV, grandson of the legendary golfer. We have enlisted the services of IMG to plan and run the Classic, and professional golfer Jay Haas has been signed to headline the event.

2011 was a very 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 visit our website at www.CSFinfo.org, click on Contact Us on the left side of the site, update all of your information, and we will add you to our email contact list.

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!

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