Alexandra Powers Cellucci has joined the NF Northeast Board of Directors.
In making the announcement, Board Chair 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.”
Alex was diagnosed with 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, Alex, her father and two of her sisters are battling the ravages of NF2. Alex 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 Alex, and in addition to teaching numerous fitness classes she is employed as a companion caretaker with a visiting nurse agency.
However, her greatest joy is spending time with her