OVER $2 MILLION RAISED FOR NEUROFIBROMATOSIS RESEARCH
The Children’s Tumor Foundation Benefit Gala, held on December 6, 2012 in New York City, raised over $2 million for neurofibromatosis (NF) research, a new record for the annual event. With over 500 people from across the country in attendance, the atmosphere in the ballroom at Cipriani Wall Street was buoyant as the final tally was announced. The funds raised will support critical research into NF, a genetic disorder that causes tumors to grow on nerves throughout the body, and affects one in every 3,000 people.
The Foundation was honored by the participation of world champion race car driver and TV personality Justin Bell as master of ceremonies, and the musical entertainment of Grammy-nominated pianist Chuchito Valdes and his Latin Quartet. Poignant speeches were delivered by the evening’s honorees: Mr. Richard Horvitz and Dr. Kaleb Yohay, recipients of the Children’s Humanitarian Award, and Mr. Drew Leathers, the 2012 Children’s Tumor Foundation Ambassador.
Richard Horvitz, the evening’s corporate honoree, is Chairman of Moreland Management Company and has made a lifelong commitment to improving the lives of children and young adults living with NF. He has served as Chairman of the Children’s Tumor Foundation’s Board of Directors and under his leadership, federal funding for NF research increased by $200 million. In addition, he has personally funded 11 Young Investigator Awards, illustrating the importance of supporting new research. At the Gala he reflected that years ago when NF was just being recognized, it was not always clear where research dollars should go, since at the time so much about the disorder was unknown. But all that has changed. “We know what we want to do. We know how to get there. We know the paths we want to take. We just need the resources,” said Horvitz. A video about Mr. Horvitz, which premiered at the Gala, can be viewed here.
The evening’s medical honoree, Dr. Kaleb Yohay, is a pediatric neurologist, NF physician, and Director of the Comprehensive Neurofibromatosis Clinic at the New York-Presbyterian/Weill Cornell Komansky Center for Children’s Health. He has specialized in neurofibromatosis for over a decade, serving as a past Co-Director of The Johns Hopkins Hospital Comprehensive Neurofibromatosis Center, and publishing 14 papers on the subject. Dr. Yohay is beloved by his young patients due in large part to his philosophy of including them in discussions regarding their medical care. “The very first thing I do is talk to the child,” said Dr. Yohay, “I think a lot of times there is a tendency to talk straight to the parent first when actually the child is the patient.” A video about Dr. Yohay can be viewed here.
This year’s Children’s Tumor Foundation Ambassador was also announced, Mr. Drew Leathers. Mr. Leathers was diagnosed with schwannomatosis (a form of NF) at age 16. In 2009, after surgery to remove a tumor from his spinal cord, he became a quadriplegic, descended into unrelenting pain, spent 183 days at Johns Hopkins Hospital, and was confined to a bed for most of 2010. In 2011, treatments at Johns Hopkins led to his pain levels receding and the recovery of enough strength and movement to master a push wheelchair. A video of Mr. Leathers can be seen here.
In his speech at the gala, Mr. Leathers stated, “The treatment I received was an investment in all of the patients who share my disorder, and in all of the families who share their burden. Our world will be forever changed because of the research that created this hope. But we are not done. Far from it! The opportunity is here, and tonight can offer a brighter tomorrow.” With that, Drew was joined onstage by his brothers, Chad and Ben, who held his hands as he stood for the first time in three years.
This emotional crescendo to the evening brought the audience to its feet, and emcee Justin Bell reflected in his closing remarks that the hope is to one day gather in celebration of a world in which effective treatments for NF have been found and people no longer suffer from neurofibromatosis.
About Children’s Tumor Foundation
The Children’s Tumor Foundation is a 501(c)(3) not-for-profit organization dedicated to finding effective treatments for the millions of people worldwide living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2, and schwannomatosis. NF causes tumors to grow on nerves throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain. NF affects one in every 3,000 people, more than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined. The Children’s Tumor Foundation funds critical research into neurofibromatosis. In addition to benefitting those who live with NF, this research is shedding new light on several forms of cancer, brain tumors, bone abnormalities, and learning disabilities, ultimately benefiting the broader community. For more information, please visit www.ctf.org.
Media Contact:
Simon Vukelj
Director of Communications
Children’s Tumor Foundation
212-344-7568
svukelj@ctf.org
