Annual Report
Transcription
Annual Report
2009 Annual Report Built On Leadership, Vision, And Commitment To Find A Cure Our Mission To advance knowledge through research and to educate the medical, allied sciences, and lay community about Chiari malformation, syringomyelia and related CSF (cerebrospinal fluid) disorders. The Chiari & Syringomyelia Foundation, Inc. is a national a 501(c)(3) organization committed to disseminating accurate and current information about treatments for and best practices surrounding the management of Chiari malformation (CM), syringomyelia (SM) and related CSF (cerebrospinal fluid) disorders. Many recognized world-class physicians, scientists and professionals agreed to collaborate and form a superior Medical Research Board. The trusted and dedicated members of our Board of Directors and Board of Trustees include community and business leaders, educators, legal experts, families, and patients, who have been advocates in the CM/SM community for years. They have the skills and passion to create, fund, and direct programs and research that will change the lives of the 300,000 families affected by CM/SM. 29 Crest Loop, Staten Island, New York 10312 718-966-2593 Board of Directors Paul J. Farrell Chairman and Founding Member James E. Feisthamel Director Joe Fitzpatrick Vice Chairman and Founding Member Steve Kragrud Treasurer Lory Watson Director and Founding Member Cathy Poznik Secretary Board Of Trustees Bobby Jones Society Michael N. Mikula, Board of Trustees Chairman Simon J. Archibald, PhD Robert Tyre Jones IV, Psy.D. Edwin B. Jordan Douglas E. Kindlon Richard E. Kuntz, MD Sean Lilienfeld, MD Robert E. Rumphrey Staff Dorothy Poppe Executive Director Andrea Grosz Marketing & Development Director Medical Research Board Allison Ashley-Koch, PhD Duke University Medical Center - Durham, North Carolina Ulrich Batzdorf, MD - Executive Committee David Geffen School of Medicine at UCLA - Los Angeles, California Edward C. Benzel, MD - Executive Committee The Cleveland Clinics Foundation - Cleveland, Ohio Paolo A. Bolognese, MD The Chiari Institute - Great Neck, New York Richard G. Ellenbogen, MD - Executive Committee University of Washington - Seattle, Washington Timothy M. George, MD Dell Children's Medical Center of Central Texas - Austin, Texas Barth A. Green, MD The Miami Project to Cure Paralysis University of Miami School of Medicine - Miami, Florida Victor Haughton, MD University of Wisconsin - Madison, Wisconsin John D. Heiss, MD National Institutes of Health - Bethesda, Maryland Bermans Iskandar, MD - Executive Committee University of Wisconsin Hospitals - Madison, Wisconsin Roger W. Kula, MD - Executive Committee The Chiari Institute - Great Neck, New York Francis Loth, PhD University of Akron - Akron, Ohio Dominic J. Marino, DVM, DACVS Long Island Veterinary Specialists - Plainview, New York Arnold Menezes, MD University of Iowa College of Medicine - Iowa City, Iowa Miseo Nishikawa, MD, Japan The Chiari Institute - Great Neck, New York Letter from the Chairman At this joyous time of year, we reflect on the many blessings 2009 held for the Chiari & Syringomyelia Foundation. Thanks to you and your generous gifts, we accomplished many short term goals in 2009, established the framework for many exciting long term projects, and now we look forward to a fruitful and productive 2010. CSF is comprised of many dedicated and exceptionally goal‐oriented people who are committed to seeing our vision of finding a cure for CM and SM become a reality. I’d like to update you on the progress we made in 2009. Regarding our fundraising efforts, our core events continue to provide us with the needed revenue to continue on to our goals, even in these difficult economic times. Your continued generosity is inspiring! Our second annual Charity Ball, held on March 28, in Staten Island, New York, was a huge success, and on September 13, our second Race for the Cure at the Arlington Park Race Course near Chicago generated more excitement, awareness and funds. These two events raised over $265,000. September 21 also marked our second Conquer for Kaya Golf Tournament in San Antonio, Texas, hosted by the Culver family, which raised money for research, and on September 12, the Motorcycle Ride For A Cure took place in Utica, New York. This is the second year that Board of Directors member‐elect Jim Feisthamel and his wife Mary Ellen have hosted this event to benefit CSF. The Feisthamel’s also hosted the first CSF Valentine’s Day Dinner Dance in Utica on February 14, and on October 10, an Education & Awareness event was held for the first time in Little Rock, Arkansas, at an Autumn BBQ party hosted by Ed and Richelle Daniel. Our Strategic Planning meetings in 2008 have truly paid off. We are extremely proud to announce the appointment of our newest Board of Trustees members, Dr. Simon J. Archibald, Chief Scientific Officer, Integra LifeSciences Corporation; Dr. Richard E. Kuntz, Sr. Vice President and President, Medtronic Neuromodulation; and Dr. Sean Lilienfeld, Vice President Clinical Research & Medical Affairs, Codman & Shurtleff, Inc. This partnership with industry leaders will provide additional intellectual and business capital that are “priceless!” At the end of last year, our “wish list” included establishing our first CSF chapters, completing a series of informational and educational DVDs, taking our cause to the National Institutes of Health, and laying the groundwork for our most ambitious project yet, a spectacular Pro‐Am golf tournament to be held in the Atlanta area, the Bobby Jones Classic for CSF. I am pleased to report that we made exceptional progress on each of these goals. Through the comprehensive and tireless work of Jennifer Cleary, Board of Directors member Cathy Poznik, Bryan Downey, Andrea Grosz and Dorothy Poppe, I am proud to announce the incorporation of our first four CSF chapters, located in Cleveland, Denver, Utica and Washington, DC. Our Education and Awareness series has already directly impacted over 250 families this year and included respected keynote speakers Dr. John Heiss, Dr. Fraser Henderson, Dr. Mark Luciano, and Dr. John Oro’. CSF’s plans include opening additional chapters in 2010 in Chicago, Washington State, Pittsburgh, and the Carolinas. Continued on following page Letter from the Chairman (continued from previous page) Earlier this year, we completed the filming and editing of a new set of nine educational and informational videos, which were made possible by a very generous gift from the Jordan Family Foundation, through Board of Trustees member Burt Jordan. Special thanks to our Emmy award winning video team, Bob Bagley and Sterling Johnson, for their efforts in bringing this project to completion. View our Awareness video page. In July, Dorothy Poppe, Board of Directors member Lory Watson and I met with representatives of the National Institute of Neurological Disorders and Stroke in Bethesda, Maryland to discuss the procedures for receiving funding for NIH sponsored research into CM and SM. We will continue to pursue this valuable resource on May 1, 2010 with a “Think Tank Meeting” of our Medical Research Board, scientists, Board of Directors, Board of Trustees and the NIH. Read CSF Advocacy News. This year, CSF, in collaboration with the Monkton Institute, is sponsoring a Research Fellow from the Congress of Neurological Surgeons. Research is a priority for our organization and CSF is in the planning stages of an International Engineering Symposium under the guidance of Dr. Frank Loth, to be held in Switzerland in 2011 to further cooperation on current research. Finally, it is with great pleasure that I introduce the Bobby Jones Classic for CSF, tentatively scheduled for April 2011. We have partnered with Peter Jacobsen Sports, a full‐service sports and entertainment marketing firm that specializes in golf tournaments involving professional golfers to benefit charitable organizations such as CSF. 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, and by the driving force behind the event, Board of Directors member Steve Kragrud. 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, add or update your information, and you will receive the CSF eNewsletter. And please consider making your year‐end tax deductible contribution to CSF. Thank you so much for your support of CSF! Have a healthy & happy New Year! Paul J. Farrell Chairman and Founding Member Calendar of Events Valentine's Gala Dinner Dance February 14, 2009 - Utica, New York Denver Area Education & Awareness Fundraising Event March 2, 2009 - Longmont, Colorado 2nd Annual Charity Ball March 28, 2009 - Staten Island, New York CSF Strategic Plan Meeting May 2, 2009 - San Diego, California Meson Sabika Summer Patio Party June 18, 2009 - Naperville, Illinois Greater Metropolitan Washington Area Chapter Meeting July 21, 2009 - Lanham, Maryland 4th Annual Benefit and Motorcycle Ride to Help Find a Cure for Chiari Malformation and Syringomyelia September 12, 2009 - Marcy, New York 2009 Buffalo Bicycle Classic September 13, 2009 - Boulder, Colorado 2nd Annual Race for the Cure September 13, 2009 - Arlington Heights, Illinois 4th Annual Conquer for Kaya Golf Tournament September 21, 2009 - San Antonio, Texas Little Rock BBQ Party October 10, 2009 - Little Rock, Arkansas Greater Metropolitan Washington Area Chapter Meeting October 13, 2009 - Lanham, Maryland Denver Education and Awareness Meeting October 14, 2009 - Aurora, Colorado Cleveland Area Education & Awareness Program November 4, 2009 - Cleveland, Ohio Chiari & Syringomyelia Foundation Hour of Hope November 18, 2009 - Twinsburg, Ohio 2009 Summary of Activities Support and Revenue Direct Public Support Foundation & Trust Grants Program Income Special Events Income Other Income - Interest 48,863.00 24,000.00 39,641.00 205,227.00 Total Support and Revenue $318,283.00 552.00 Expenses Program Services Management & General Fundraising Total Expenses 160,834.00 60,205.00 50,348.00 $271,388.00 Net Income $46,895.00 Bobby Jones Society ($25,000 - $49,999) Michael and Denise Mikula - Excel Container Platinum ($10,000 - $24,999) Paul J. Farrell - The Farrell Law Firm, LLP James and Mary Ellen Feisthamel Burt Jordan Douglas and Karen Kindlon Bob and Toni Rumphrey Gold ($5,000 - $9,999) BlueCross BlueShield of Illinois Bob and Janet Janess, inPLAY EVENTS Daniel Kindlon Tim and Jane Kindlon Pro-Pak Industries Mark and Laura Ruane BlueCross BlueShield of Illinois Bob and Janet Janess, inPLAY EVENTS Daniel Kindlon Silver ($1,000 - $4,999) AIG Environmental All County MRI George Amann, Unimac Graphics Denise Aversano Blistex Jim and Lisa Bolduc BP Fabric of America Fund Marsha Carlson Joe and Chrissy Censullo Dolores Cleary Gina Cornick Leo and Debbie Deiger North Shore/LIJ Health System Gene & Bonnie Downey William and Susan Doyle Dr. and Mrs. John and Suzanne Oro Dr. and Mrs. Timothy Farrell Paul and Patricia Farrell Manhasset Diagnostic Imaging, P.C. 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