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The one hundred honoree: Children’s Tumor Foundation

Donor Story

The one hundred honoree: Children’s Tumor Foundation

Mass General Giving

The Children’s Tumor Foundation (CTF) is the world’s leading nonprofit funding source of neurofibromatosis (NF) research. From 2012-2016, the foundation will have committed $30 million to NF research initiatives.

With local chapters throughout the United States, CTF is dedicated to finding effective treatments for the millions of people worldwide living with neurofibromatosis, 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.

CTF funds peer-reviewed research into neurofibromatosis which, in addition to benefiting those who live with NF, is shedding new light on several forms of cancer, brain tumors, bone abnormalities and learning disabilities, ultimately benefiting the broader community. The foundation also provides patients and their families with thorough and accurate information; assists in the development of clinical centers and best practices; and expands public education and support.

At Mass General, since 2007, the foundation has provided 12 principal investigators with more than $1 million through its Young Investigator, Clinical Research, and Drug Discovery Initiative Awards, as well as its NF Preclinical Consortium grants and contracts.

The foundation also helps develop practitioners who advance the field, including Andrea McClatchey, PhD, now co-chair of its Research Advisory Board. “The foundation’s network and research support have had a huge impact on my career,” writes Dr. McClatchey, who heads a lab at Mass General. “Its support when I was a post-doctoral fellow introduced me to a community of scientists and clinicians who have become my mentors and colleagues.”