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NF NEWS W I N T E R 2013 T h e N e w s l e t t e r o f t h e C h i l d r e n ’ s Tu m o r F o u n d a t i o n Children’s Tumor Foundation Benefit Gala Breaks Fundraising Record The Children's Tumor Foundation held its Annual Benefit Gala on December 6, 2012 in New York City. The Gala, postponed from November 1, 2012 due to Superstorm Sandy, was one of the few major events in the New York area that persevered and rescheduled, just five short weeks after the original date. Despite all the obstacles, the event raised more than $2 million for neurofibromatosis (NF) research. With over 500 people from across the country in attendance, the atmosphere in the ballroom at Cipriani Wall Street was filled with cheers as the record breaking tally was announced. CTF’s Ambassador, Mr. Drew Leathers, with his brothers Ben and Chad, stands for the first time in three years at the Gala. The Foundation was honored by the participation of several special guests. World champion race car driver, TV personality, and Racing4Research partner, Justin Bell served as master of ceremonies. Grammy-nominated Latin Jazz pianist Chuchito Valdes and his Quartet provided the musical entertainment for the evening, and auctioneer Nicholas Lowry, of Swann Galleries and Antiques Roadshow fame, led the live auction which included an opportunity to donate funds to CTF's Clinical Research Awards. Guests gave generously during this portion of the auction knowing that every dollar they contributed would be matched by an anonymous donor. Heartfelt speeches were delivered by the evening's honorees, Mr. Richard A. Horvitz and Dr. Kaleb Yohay, recipients of the Children's Humanitarian Award, and Mr. Drew Leathers, the 2013 Children's Tumor Foundation Ambassador. continued on page 12 Young Investigator Awardee Reports Major Advance in NF2 Research Helen Morrison, PhD The Children’s Tumor Foundation is pleased to announce that a study led by Helen Morrison, PhD and CTF grant recipient Alexander Schulz has discovered a previously unknown mechanism for the peripheral nerve damage seen in NF2 patients. NF2 has long been known to cause nerve damage by harming Schwann cells, which wrap around nerves as Alexander Schulz part of the protective myelin sheath. Schulz and colleagues found evidence that axons, which are long nerve fibers that carry signals from nerve cells, are also harmed. While this finding is based on animal studies, similar changes in axons were seen in nerve tissue taken from two human patients with NF2 and peripheral neuropathy (numbness in the hands or feet). As reported in the scientific journal Nature Neuroscience, damage to axons may explain the mystery of why some NF2 patients develop peripheral neuropathy, even if they have no tumors affecting these areas. This work was funded by a 2012 Children’s Tumor Foundation Young Investigator Award to Schulz, a medical student in the laboratory of Helen Morrison in the Leibniz Institute for Age Research in Jena, Germany. “This report is groundbreaking because it gives us a new target for studying NF2,” explains Annette Bakker, PhD, Chief Scientific Officer at the Children’s Tumor Foundation. “If axons can be damaged as a result of NF2, we need to widen our view to include finding ways to address this damage, instead of being focused only on the Schwann cell changes in NF2.”

NF News Winter 2013

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