Neurofibromatosis, Inc., Northeast

CONTACT:

9 Bedford Street
Burlington, MA 01803
781-272-9936
www.nfincne.org

Karen Peluso, Executive Director

DESCRIPTION:

Neurofibromatosis (NF), incorrectly but commonly known as the "Elephant Man's" disease, involves the uncontrolled growth of tumors along the nervous system, sometimes producing terrible disfigurement, deafness, blindness, brain tumors, cancer and death. It is the most common genetic disorder caused by a single gene and affects three times as many people as muscular dystrophy and cystic fibrosis combined. At the moment, there is no means of prevention, no effective treatment and no cure. NF Inc., New England was founded in 1988 as part of a national movement to help find a cure by increasing public awareness and government funding, but also by directly funding peer-reviewed scientific research. It has successfully lobbied for increased federal support for research, and awarded more than $2 million directly in research grants. They provided the impetus behind creating a Center for Neurofibromatosis and Allied Disorders at Harvard Medical School, the first of its kind in the world, to facilitate access to tissues and genetic material, to coordinate human studies across several institutions, and to test new diagnostic procedures and therapies. Medical research is a difficult field for small charities wanting to make a difference, but NF Inc. has managed to make the difficult transition to professional operations at high cost-effectiveness. Here is a highly efficient and worthy medical research charity in which you, too, can make a difference.

(1999: HUMAN SERVICES: Health and Aging: Medical Research)