Volunteers Came Together to End NF
First event was the golf tournament at the International Golf Course. K.C. Jones, coach of the Boston Celtics, was Honorary Chairperson; he’s flanked by tournament Co-Chairs Jeff Twiss (left) and Paul Epstein (right). Second row (l to r): Bert and Karen Peluso, Paul Epstein, Harriet Lewis, Jimmy Rodgers, Barbara Hollis, and Alan Lewis. Harriet and Alan Lewis of Grand Circle Travel were the Presenting Sponsors.
NF Inc. Mass Bay Area was incorporated in 1988 and applied for nonprofit status. The IRS granted 501(c)(3) nonprofit status in February 1989. The organization later changed its name to NF Northeast to better describe the area served.
Founding Board of Directors
Bert Peluso •. Karen Peluso •. Jeffrey Hollis. •. Barbara Hollis. •. Naomi Stonberg •. Jeffrey Stonberg. •. Harriet Lewis. •. Kate Duff. •. Paul Epstein. •. Jeffrey Twiss
NF Northeast joined NF Midwest and the Texas NF Foundation to form the NF Advocacy Coalition. Shown in photo is the first group of advocates to go to the Hill to fight for the continuation of the Department of Defense NF Research program. That year $8 million dollars from the DOD was directed to NF research.
With Seed Funding from NF Inc. Mass Bay (NFNE), the Harvard Medical School Center for NF and Allied Disorders Was Established.
The Harvard Medical School Center for NF and Allied Disorders
With a pledge of support from NF Northeast, Dr. James Gusella established the Harvard Medical School Center for NF and Allied Disorders to further advance NF research and increase collaboration between Massachusetts General Hospital and Children’s Hospital Boston. NF Northeast provided $1 million over 10 years.
Photo shows Dr. Gusella (seated) with members of NFNE’s Medical and Science Committee.
Preparing for Clinical Trials
NF Northeast joined The REiNS International Collaboration founded by Dr. Scott Plotkin, Mass General Hospital, and Dr. Brigitte Widemann, of the National Cancer Institute (NCI) at the time, to achieve consensus within the NF community about the design of future clinical trials, with a specific emphasis on endpoints. Clinical endpoints are used in clinical trials to assess validity and generalizability of the study, and the evidence they generate is important to clinicians and patients alike. NF Northeast members participated by serving as patient representatives in working groups.
The US Food and Drug Administration (FDA) approved Koselugo (selumetinib) for the treatment of neurofibromatosis type 1 (NF1) for children ages 2-17 who have plexiform neurofibromas (PN) that cause symptoms and cannot be completely removed by surgery, or for which surgery is not advisable due to potential unwanted side effects with surgery.