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NF NEWS V ol u m e I I I , 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 banking on a cure NF-related tissue for storage and research purposes. children’s tumor foundation creates the nf biobank A longtime dream of the Children’s Tumor Foundation (CTF) became reality this summer as the first neurofibromatosis (NF) tissue samples were deposited in the NF Biobank. The 94-degree heat on the day of the first sample collection didn’t matter—the samples were flash-frozen in liquid nitrogen and kept on dry ice or stored in a preservative for their trip from an outpatient surgery center in New York City to a biorepository in Frederick, MD. There they will be carefully maintained in preservatives or stored at temperatures as low as -150 degrees Celsius, ready to ship out to qualified researchers. These first samples came from a patient who was undergoing removal of multiple dermal neurofibromas (skin tumors) who agreed to donate this tissue to research. CTF will continue to collect tissue from up to 50 more patients in the coming months. The surgeon was Dr. Hubert Weinberg of New York City, who offers NF1 patients removal of large numbers of skin tumors at one time, under general anesthesia. Dr. Weinberg realized the value of this tissue, which would otherwise be discarded, to the NF community in shedding new light on the processes at work in neurofibromatosis. He worked with CTF to develop an experimental protocol, which received Institutional Review Board (IRB) approval in May 2013. Development of the protocol could not have been completed without the guidance of CTF consultant Dr. Mindell Seidlin, who spent countless hours ensuring that all the details were well thought out as well as researching an appropriate storage facility. The protocol and consent form that she helped develop was approved on its first submission. While this first protocol is specific to dermal neurofibromas, it will serve as a basis for creating other protocols that can eventually be applied to the collection of other types of The initial use of the dermal tissue will be in two pathology research laboratories. The tumors will be analyzed in a systematic way to determine which kinds of cells are present and how these cells are organized. WHAT IS A BIOBANK A biobank is an organized collection of human biological material and associated information stored indefinitely under stable conditions for research purposes. The key features that make a biobank valuable are: • Giving researchers convenient access to data from large numbers of individuals with the same condition • Getting the most out of donated tissue by distributing it to multiple researchers for multiple purposes • Allowing the same tissue to be looked at in many different ways “picture a world without NF” photo contest winner announced! Many thanks to everyone who submitted a photo to the Children’s Tumor Foundation’s “Picture a World Without NF” contest, part of the neurofibromatosis awareness month festivities. During May, the Foundation asked the NF community to take a photo with any item bearing the CTF or NF logo, at a famous landmark or in your neighborhood, with friends and family or solo, to show that no matter where you are, who you are with, or what you are doing, you’re always fighting for a world without NF. All submissions can be viewed in an album on CTF’s Facebook page ( Now, without further ado, the winner is Nickie Cole of Parker, CO. Nickie says, “My submission was taken at Hanger Prosthetic’s All Ages Amputee and Mobility Clinic at Colorado University. My youngest son, Owen, now three, lost his leg at ten months old due to severe pseudoarthosis. I captured this profound moment when he noticed all the other amputees and identified with them. He saw them running and he wanted to run too. He is so brave, and doesn’t let anything stop him. He is my hero.”

Children's Tumor Foundation Newsletter, Volume III 2013

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