NF News is the official publication of the Children’s Tumor Foundation and is published quarterly. All issues are available on our website at www.ctf.org. Please direct any questions or feedback to the editor (listed below).
Georgia
On April 16, 2012, the Burke family of Alpharetta, GA hosted the inaugural CureNFwithJack Golf Tournament. Jake and Beth Burke organized the event for their seven-year-old son, Jack, who lives with NF1 and whose local popularity rivals the Mayor of Alpharetta's. Approximately 160 people attended, including Michael Pisciotta of the American Junior Golf Association, and over $50,000 was raised for NF research. Inspired by this wonderful event, the Burke's friend Matt Benson will host the CureNFwithJack Classic in Washington, D.C., presented by Long & Foster Realty, on October 8, 2012.
Georgia
Held on June 1, 2012, this year's annual Southern Mustache Open golf tournament was, again, a huge success. Organized by Stephen and Leslie Watts and their hardworking committee, in partnership with Kiewit Construction Company, the event featured mustaches of all shapes and sizes, and raised more than $40,000 for NF research.
North Carolina
On June 3, 2012, Michael and Kelly Peterson, and their two-year-old daughter Natalie who has neurofibromatosis, participated in the Los Angeles, CA NF Walk. On the same day, Michael's parents, Carolyn and Charles, hosted a garden party "fun raiser" called New Bern Cares to Cure NF in the backyard of their home in New Bern, NC. Together they raised $50,000 for NF research.
Cleveland
On June 24, 2012, the Cleveland's Got Sole Sneaker Showcase raised over $11,000 for the Children's Tumor Foundation. Huge thanks to the Petras family for volunteering at this event and representing the Foundation, and to the Cleveland's Got Sole organizers Kevin Kramer and Andrew Watts.
Virginia
On June 27, 2012, Mia Rashkind, a five-year-old girl from Norfolk, VA who is battling neurofibromatosis, had the opportunity to meet actor Tom Hanks on the set of his new movie Captain Phillips. Tom Hanks, as well as actors Max Martini and Yul Vazquez, took a break from filming to meet and spend time with Mia and her family.
Massachusetts
Molly's second annual "Spring for a Cure" was held in Newburyport, MA on June 2, 2012. The event featured a carnival theme complete with games, prizes, food, a penny candy store, music, more than 50 donated raffle and silent auction items, a visit from Elmo, and a much loved live animal show by Curious Creatures. Despite a dreary rainy day, over $5,400 was raised. In addition, one of the event's sponsors, Axcelis Technologies, donated $3,400. To learn more please visit www.mollybit.com.
The Children's Tumor Foundation is a 501(c)(3) not-for-profit organization dedicated to improving the health and well-being of 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 is underrecognized and underdiagnosed yet affects more people than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined. The Children’s Tumor Foundation funds critical research to find treatments for NF. 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. Editor Mary Vetting, mvetting@ctf.org Creative Katherine Wu, kwu@ctf.org
Foundation Staff John W. Risner, President Research Annette Bakker, PhD, Chief Scientific Officer Min Yi Wong, Research Program Director Daniel Aiese, Research Program Assistant Development and Volunteer Relations Rick Lepkowski, Chief Development Officer John Heropoulos, Senior Vice President Traceann Adams, NF Walk Program Director Jessica Beckerman, NF Walk Coordinator Chrissie Connors, NF Walk Coordinator Jill Beck, Racing4Research Program Director Sarah Coulam, NF Endurance Program Director Emily Phillips, NF Endurance Manager, Logistics/Marketing Lori Weitzel, NF Endurance Team Support Manager Bob Skold, NF Endurance Team Development Patrice Pancza, Program Director, Grants and Foundations Carolyn Castellano, Project Director, Major Events Kelly Mills, Volunteer Relations Regional Manager Julie Pantoliano, Volunteer Relations Associate Garrett Gleeson, Program Director Amita Patel, Development Officer Chad Leathers, Program Director Kristine Poirer, Program Coordinator Danielle Meyer, Tech Support, National Programs Public Education and Patient Advocacy Simon Vukelj, Communications Director Mary Vetting, Communications Associate Katherine Wu, Design Associate Finance and Administration Judi Swartout, Chief Financial Officer Sarah Anderson, Accountant Fredric Sinclair, Database Manager Monique Boucher, Database Associate Mohamed Amin, Database Assistant Rosa Amelia Perez, Project Coordinator Sarah Ill, Executive Assistant NF News • Children’s Tumor Foundation | 15