Organization Details

The Children's Tumor Foundation (formerly the National Neurofibromatosis Foundation, Inc.) is the leading resource for information on NF. Over the past 25 years, the Foundation has continued to expand its programs and services to individuals and families affected by NF. Through a national network of 11 Chapters and 15 Affiliates as well as a roster of international affiliates, the Children's Tumor Foundation serves the 120,000 people affected with NF in the United States.

Medical Research The Foundation sponsors scientific research aimed at finding effective treatments and a cure for NF 1 and 2, and schwannomatosis. In 2004, seven two-year Young Investigator Awards were announced. In addition, symposia and medical meetings are sponsored to bring together the leading researchers in NF in order to promote a better understanding of the disorder. The Foundation promotes the development of clinical activities in order to assure individuals with NF access to the highest caliber of medical care. The "Research Newsletter" is published every month for use by scientific and clinical professionals but is also accessible to the general population through the web site. A database of NF clinical trials is maintained and published on the website as well.

Chapters and Affiliates Eleven Chapters and fifteen Affiliates nationally assist in carrying out the mission of the Children's Tumor Foundation on a local level. Patient support, public awareness, and fundraising for research for effective treatments and a cure provide the focus for their activities. Patient support takes the form of Support Groups, individual counseling and distribution of informational materials, as well as Medical Symposia. Participation at health fairs, distribution of PSA's, obtaining newspaper and radio coverage of events, and mailings to physicians, libraries and hospitals assist in promoting Public Awareness. Local and regional fundraisers take the form of Golf Tournaments, Walk/Runs, Concerts, Tea Parties, participation in the Marathon Program, Canister Drives, Icon Sales, and Theatre Parties are some of the varied examples.

Children's Programs The Children's Tumor Foundation International Summer Camp brings together children with NF from all over the world to learn about NF, have fun and make new friends. The camp experience is then followed up with a Pen pal Program. Children with NF govern a "Youth Council". Its activities are designed to instill confidence and create a sense of accomplishment and self-esteem. It is also the building block for developing adult volunteers.

Address

95 Pine Street, 16th Floor
New York, NY 10005
(212) 344-6633

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