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2012 Letter from the Chairman

With the joy of the holiday season upon us, we take the opportunity to reflect on what an extraordinary year 2012 was for the Chiari & Syringomyelia Foundation. Thanks to you and your generous gifts, we accomplished many of the goals we set for 2012, and established new and exciting events. After a productive and eventful year, I’d like to update you on the progress we made in 2012.

In consideration of our core values of honesty, integrity, social and fiscal responsibility, and our commitment to quality that drives us in all our activities, we are very proud to report to you that in 2012, CSF earned both the Guidestar Exchange Seal, and the Better Business Bureau Seal of recognition as an accredited charitable organization.

GuideStarExchange.gif Guidestar Exchange members are non-profit organizations that have updated their reports to the fullest—sharing information, documentation, photos and videos with Guidestar’s visitors. CSF has always believed in transparency to provide our donors with up-to-date information on our fundraising activities, our efforts to raise awareness, and our efforts to fund research. Our recognition by Guidestar Exchange is a further means to that end.

BBB.png The Better Business Bureau has recognized CSF as meeting the basic BBB standards in how we govern our organization, in the ways we spend your money, in the truthfulness of our re presentation, and in our willingness to disclose and share basic information with the public. This process took 18 months to earn BBB recognition, and we are extremely proud to inform you that we are the only Chiari and syringomyelia organization that has attained this important accreditation.

Along with achieving acceptance by these respected institutions, we continue to strive to raise awareness of Chiari malformations and syringomyelia. We now have eight chapters in the United States, which offer free quarterly educational lectures for both physicians and patients. These lectures are videotaped and then posted to the CSF website for anyone to view. Last year alone, over 78,000 people accessed these lectures on our website.

UNITECSF250x250.jpg In 2012, we also kicked off our Unite@Night walks at various locations around the country. Over 900 people participated to raise awareness and funds to help support our chapter programs.

Regarding our fundraising efforts, once again, our signature events continue to provide us with the needed revenue to continue on to our goals, even in these difficult economic times. These events raise the money to help us operate CSF, and as I will explain below, allowed CSF to fund important research projects, conferences and symposiums that bring doctors and scientists together to exchange research, information and ideas on Chiari malformation and syringomyelia. Your continued generosity and support is inspiring, and is the reason we continue on!

In May 2012, we held our inaugural Bobby Jones Classic For CSF golf tournament at the East Lake Golf Club in Atlanta, GA, the home of the FedEx Cup Tour Championship, and the home course of legendary golfer Bobby Jones. The day was a huge success, and featured professional golfer Jay Haas and CSF Trustee Bob Jones IV, grandson of Bobby Jones. The second Bobby Jones Classic For CSF will be held on May 20, 2013. Please consider joining us for this unique event. Visit WWW.BOBBYJONESCLASSIC.COM for more information.

In June, we held our annual Charity Ball on Staten Island, New York, honoring CSF Scientific, Education & Advisory (SEA) Board members Dr. Harold Rekate, Dr. Paolo Bolognese and Dr. Roger Kula, and Mr. Joseph Salvani and Ms. Denise Aversano of JFS Investments for their philanthropic support of CSF. In September, we held our Dinner Dance For a Cure in Twinsburg, OH, and followed that with our Taste For a Cure at the Barrington Hills Country Club in Barrington Hills, IL.

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We also recently completed our most ambitious event, the third annual Night of Light Children’s Gala, held on November 10 at the Anderson House in Washington, DC, which was a huge success. This magical evening included international ambassadors, world-class physicians who treat Chiari and syringomyelia, and 90 philanthropic guests from around the world. We were most fortunate to honor Adam and Margaret Korn, whose fundraising efforts have started us on our way to establishing an endowment to enable us to fund sustainable research to help us reach our ultimate goal of finding a cure for Chiari malformation and syringomyelia.

Research is a top priority for our organization, and as I mentioned earlier, CSF has proudly sponsored lectures and conferences in the past and will continue to do so in the future. I previously reported to you our sponsorship of the First CSF Hydrodynamics Symposium in Zurich, Switzerland in July 2011, and I am happy to report to you that CSF will be the signature sponsor of the Second CSF Hydrodynamics Symposium, to be held on June 24-25, 2013 at the Feinstein Institute for Medical Research at North Shore/LIJ Hospital on Long Island. This International Engineering Symposium is under the guidance of SEA Board member Dr. Frank Loth. View Symposium flyer HERE .

I am also very proud to announce to you that in 2012, CSF funded $100,000 in research grants, on projects that included:

CSF also funded a Chiari Fellowship at the Duke Center for Human Genetics.

These grants were awarded following scientific review by the experts on our CSF SEA Board.

It’s been 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 click HERE , update all of your information, and we will add you to our email contact list.

And please consider making your year-end tax deductible contribution to CSF by donating ONLINE . 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 2013!

Paul J. Farrell

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