Neurofibromatosis Northeast welcomes Quincy Resident Alexandra Powers Cellucci as new member of the Board of Directors

Burlington, MA based Neurofibromatosis Northeast, the non-profit patient advocacy organization whose mission is to find a cure and treatment for neurofibromatosis by promoting scientific research, creating awareness, and providing hope and support to those who are affected by NF, is extremely pleased to announce that Quincy resident Alexandra Powers Cellucci has recently been elected to serve as a member of their Board of Directors. Led by Board Chair, Lori Ryan, RN, MS, Neurofibromatosis Northeast now has a highly professional 14-member board.

Lori Ryan commented, “We are so delighted to have Alex join the Board of Directors. As a person who lives with NF2 she brings her valuable personal experiences to the organization. Neurofibromatosis Northeast has been adding members to the Board over the past few years and Alex adds yet another voice to represent our NF community. We look forward to closely working with her as we move towards finding treatments and a cure for NF.”

Neurofibromatosis is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere on or in the body at any time. While the vast majority of NF-related tumors may initially start out benign, the disorder can be debilitating and may cause disfigurement, blindness, deafness, psychological issues and cancer.

Cellucci was diagnosed with Neurofibromatosis type 2 (NF2) at the age of 28. In looking at her genetic history, she estimates that her family has been battling NF2 for at least a century. Currently, Cellucci, her father and two of her sisters are battling the ravages of NF2. She has taken on the mission to fight back against NF, and has immersed herself in activities to support NF Northeast. She serves on the Coast to the Cure NF Bike Ride committee, has formed teams and participated in Falmouth Road Races, and has been a very successful fundraiser. She is dedicated to providing information and support to patients and families who are facing the NF diagnosis, and creates awareness at every opportunity, including meeting with Governor Charlie Baker during May NF Awareness Month.

Leading a healthy lifestyle and fitness has always been important to Cellucci, and in addition to teaching numerous fitness classes she is also employed as a companion caretaker with the private sector of The Norwell Visiting Nurses Agency. However, her greatest joy is spending time with her 4-year-old daughter.

NF Northeast Executive Director Karen Peluso, adds, “I have a great deal of admiration for Alex. She has commitment and determination and has become a truly valuable volunteer in our organization. She will bring a new level of energy to our Board of Directors.”

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About Neurofibromatosis Northeast:

Neurofibromatosis Northeast is based in Burlington, Massachusetts. Their mission is to find a cure and treatment for neurofibromatosis by promoting scientific research, creating awareness, and providing hope and support to those who are affected by NF.

To learn more about neurofibromatosis, visit the NF Northeast website at www.nfincne.org or call 781-272-9936.