Karen Peluso has been involved with the NF effort since 1982. At that time her daughter was seriously impacted by NF type1 and she and her husband, Bert, were shocked by the lack of awareness of NF, as well as the fact that very little scientific research was being conducted into the genetics of NF and possible treatments.
Determined to change that, they sought out other families and patients who were living with NF and the organization now known as Neurofibromatosis Northeast was founded around a kitchen table.
Karen and Bert served as members of the Board of Directors of the National Neurofibromatosis Foundation (NNFF) (now the Children’s Tumor Foundation) and were Co-Presidents of the Massachusetts NNFF Chapter from 1985 to 1987. During that time, they received the NNFF’s Courtemanche Award for Leadership.
In 1988 the Peluso’s were members of the founding Board of Directors of the National Neurofibromatosis Network.
While volunteering for NF, and raising her family, Karen returned to college to earn her master’s degree with a focus on nonprofit management. She was hired as the first Executive Director of NF Northeast in 1996 and has served in that position ever since.
She is committed to promoting NF research, providing hope and support to NF patients and families and making neurofibromatosis “a household word”.
For the past 22 years Karen has worked with members of Congress to promote federal funding of NF research through the Department of Defense Congressionally Directed Medical Research Program and The National Institutes of Health. She was one of the founders of The NF Advocacy Coalition and has presented testimony before both the House and Senate Appropriations sub-committees.
In 2006 Karen received the “Changing People’s Lives Award” from the Grand Circle Foundation in recognition of her NF advocacy. In 2013 the Board of Directors of NF Northeast created the Karen Peluso Advocacy and Awareness Fund in her honor.
Karen doesn’t require much sleep. Before coming to the office in the morning, she has already played tennis at 6AM with the Early Birds. In the warmer months she enjoys golf on the weekends and digging in the dirt of her perennial garden. Spending time with family, including Silver Belle and Steve their “senior dogs”, is always her priority.
“Neurofibromatosis has taken me down a road I was not prepared to travel. Along the way I have had the privilege of meeting the most courageous and inspiring patients, families and volunteers. Today, I still hate neurofibromatosis as much as I did the first day I heard that frightening word, but I feel blessed to have been on this journey with our amazing community.”