Teeing Off in the Fight against NF
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Teeing Off in the Fight against NF

$100k grant honors longtime supporters of neurofibromatosis research—including Alan & Harriet Lewis

Twenty-five years ago, very little research had been done about neurofibromatosis (NF), a debilitating genetic disorder that causes tumors to grow on nerves throughout the body. Today, NF patients and their families can appreciate a new level of awareness, advocacy, and hope for a cure, thanks in part to Neurofibromatosis Inc., Northeast. The Massachusetts-based organization celebrated its 25th anniversary this past June at its annual NF Golf Tournament, which has raised a total of more than $3 million for NF research.

Alan and Harriet Lewis have been proud sponsors of the tournament every year since its inception. They first became involved with NF when a family member was believed to have been diagnosed with the disease. Eventually, the diagnosis was reversed—but this didn't change Alan and Harriet's commitment to create awareness and raise much-needed funds for NF research. In 2006, they awarded Karen Peluso, Executive Director of NF Inc., Northeast, with their annual Changing People's Lives Award, in recognition of her tireless work with the organization. As part of the award, the Alan and Harriet made a $25,000 gift to NF Inc., Northeast in Karen's honor.

Bob Dine, Grand Circle's Executive Vice President of Contracting and a close friend of Alan and Harriet, can attest to Karen's infectious passion. "I met her nearly 20 years ago at the tournament," Bob recalls. "Once I witnessed her commitment to the cause, I wanted to help in any way I could." He has been serving on the NF Golf Tournament committee ever since. "The people she has supporting her are amazing, too," he adds. "And it's no wonder, because her energy is contagious."

While the NF Golf Tournament is a special event for the Lewises and their supporters every year, this year was especially important—and not just because it marked the 25th anniversary of both the tournament itself and the Lewis' sponsorship of it. Karen Peluso and NF Inc., Northeast commemorated the milestone with a $100,000 "Champion Grant" to Harvard Medical School in honor of several longtime supporters: Alan and Harriet; former Boston Celtics stars K.C. Jones and Tommy Heinsohn; and former Red Sox star Dwight Evans and his wife, Susan.

Specifically, the grant will fund the research of Dr. James Gusella, Director of Harvard Medical School's Center for NF and Allied Disorders (CNfAD). The CNfAD is a virtual center whose mission is to define the causes of NF1, NF2, and related disorders; and to develop and test treatments. Dr. Gusella's world-renowned medical and scientific advances include the breakthrough discovery of the NF Type 2 gene.

Alan and Harriet are honored to be associated with the Champion Grant. It is their greatest hope that these funds will bring Dr. Gusella closer to the next important breakthrough in the fight against neurofibromatosis.