NF Northeast is governed by a Board of Directors. Within the Board there are standing committees which include: Finance Committee, Strategic Planning and the Development Committee. There are also Pillar Committees which include Board members as well as volunteers. The Pillar committees are: NF Families and Community Committee, Medical and Science Committee and the NF Awareness Committee.
In addition to being Chair of the Board of Directors, Lori Ryan chairs the Medical and Scientific Committee and has served on the Strategic Planning Committee. She is the founder of the Annual Steps2Cure NF walk/run, and initiated and oversees the NF Scholarship Program. Lori represents NFNE at all scientific meetings as well as the Mass Biotech Council. She travels to Capitol Hill annually with the NF Coalition to advocate for NF research funding, and has served on the peer review panel for the Department of Defense’s Congressionally Directed Medical Research. Lori holds a Bachelor’s of Science degree in Nursing and a Master’s degree in the Healthcare Administration field and has worked in the clinical research field for over twenty years.
John Manth has organized an outpouring of funds and awareness of NF2 in his hometown of Buffalo via the Buffalo Marathon and numerous fund raising events. John’s daughter Leah has NF2 and he is dedicated to promoting research to find the cure. Along with his family, he travels to Capitol Hill annually with the NF Coalition to advocate for federally funded research. John also sits on the Board of the NF Network and he and his wife Linda have served on the Board of NF2 Advocure. John teaches undergraduate courses in Violence, Global Crime and Comparative Criminal Justice at Hilbert College in Hamburg, NY as well as a Criminal Justice Career Program to high school students. He holds a Bachelor’s degree in Criminology from University of Maryland and a Master’s degree in Criminal Justice and Education from Buffalo State College.
Bob Ryan chairs the Finance and Administration Committee and is a member of the Strategic Planning and Development Committees. Bob is First Vice President, Wealth Advisor and Executive Financial Services Director for The RGL Group at Morgan Stanley Smith Barney. He holds a Bachelor of Arts degree in Accounting and Computer Science from University of Massachusetts at Lowell.
Alexandra Powers Cellucci
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 4 year old daughter.
John Driscoll serves on the Development Committee and has been a member of the International Golf Committee for many years. He has actively raised funds for research and awareness by participating twice in a Golfathon for NF and running in the venerable Dublin Marathon. John has been the impetus behind numerous golf trips to Ireland that are sold at auctions to benefit NF. John has retired as the National Sales Director of Primerica Financial Services.
Past Chairman of the Board, Dr. Paul Epstein, was raised in New York. Dr. Epstein maintains a private dental practice in Burlington, MA. He holds a Bachelor of Arts degree from SUNY at Stony Brook and a DDS from Tufts School of Dental Medicine. He is presently a visiting faculty member of the LD Pankey Institute. Dr. Epstein was one of the founders of the NF Golf Tournament at the International GC in 1985. The tournament is still going strong to this day.
Henry Kay is a member of the Finance and Administration Committee, Strategic Planning Committee and the Medical and Science Committee. Henry has over 35 years of experience in the medical industry and currently is the U.S. Partner of Medica Venture Partners and an active member of two Angel Investing Groups (Boston Harbor Angels and Launchpad). He holds a Bachelor’s degree from August College, a Master’s degree in Chemistry from Rutgers University and an MBA in International Marketing from Seton Hall University.
Andrés Lessing was 9 months old when he was diagnosed with NF1. His NF was the result of a spontaneous mutation. Andrés and his family have been active within our community for many years, and one of his most critical contributions to NF Northeast was to develop our first website. Along with his father he helped organize Friends Ride for NF, a bike ride on Cape Cod – which not only raised money and awareness for neurofibromatosis, but also provided the framework for the hugely successful Coast to the Cure Ride for NF. Recognizing the critical importance of federally funded NF research, Andrés has been a Consumer Reviewer for the Neurofibromatosis Research Program (NFRP) which is part of the Congressionally Directed Medical Research Program (CDMRP). Andrés works for Blue Cross Blue Shield of Massachusetts as a Technical Business and Compliance Manager and holds a Bachelor’s degree in Economics from Brandeis University and an MBA from Boston College. Andrés and his wife are the parents of twins and they enjoy being involved in their children’s activities. They are also committed to their local community where Andrés was recently elected a Town Meeting Member.
Melissa Malerba created and organized Committed to Curing NF, a hugely successful dinner dance held annually to raise funds and awareness for Neurofibromatosis Northeast. She has run the Boston Marathon three times as a member of the NF Team, and also ran in the Buffalo Marathon to support the Run4Leah. Melissa travels to Capitol Hill during appropriations with the NF Coalition to advocate for federally funded NF research. She has been an elementary school teacher for fifteen years and is currently teaching second grade in Charlestown, MA. Melissa holds a Bachelor’s degree in Sociology from Merrimack College and a Master’s degree in Education from Framingham State College.
Cynthia is the Legal Counsel to the Chief Justice of the Boston Municipal Court Department. She serves as a Hearing Officer for the Board of Bar Overseers and is a member of the Supreme Judicial Court’s Media Advisory Committee. She has been a faculty presenter for the Judicial Institute at management trainings throughout the Commonwealth for educational programs involving the Trial Court’s Sexual Harassment Policy and the Guide to Serving Pro Se Litigants. Prior to joining the Trial Court in 1998, Cynthia was a civil litigator with a concentration in personal injury and insurance defense. Cynthia is also a member of the Massachusetts Bar Association’s Judicial Administration Section Council and its Public Law Section Council. She serves on the Boston Youth Symphony Orchestra’s Board of Directors. A cum laude graduate of Wheaton College (1986), Cynthia received her law degree from Notre Dame Law School in 1991.
Prior to retirement, David was a senior partner in a 35 lawyer general practice Boston law firm. During his 25-year tenure practicing law, he specialized in start-up businesses, counseling entrepreneurs and family businesses. David has been an active investor in start-up ventures for over 40 years and has served as an advisor to the board of directors and management of several New England based corporations. David went to Harvard Law School where he received his Juris Doctor degree. His undergraduate work was done at the State University of New York at Stony Brook, B.A. cum laude. In addition to serving on the Board of Neurofibromatosis Northeast, and chairing its Strategic Planning committee, David serves on the Board of Interfaith Family.com, a national non-profit based in Newton, Massachusetts. David is a two term past President of Temple Beth Elohim, Wellesley, Massachusetts and a former member of the national Board of the Union for Reform Judaism.
John Shea has had a 30+ year career in health systems and has served in senior roles across a number of major hospitals, including CFO and CEO positions. Until 2010, John held responsibility for business development activities for a health system in Maryland where he led marketing strategy and negotiations for acquisitions, joint ventures, and partnerships that expanded health system from 13 facilities in to 32 facilities across 9 states. John served as interim CEO of a number of troubled facilities and effectuated turnaround and/or sale of assets and established strategic relationships with targeted health organizations and built strong, trusting relationships with local systems, medical staffs, and partners. John holds CPA status from both the American Institute of Certified Public Accountants and Massachusetts Society of Certified Public Accountants and has an M.B.A. from New Hampshire College and a B.S., Accounting from Bentley College.
John Thomson served as Vice President of Strategic Research Alliances Networks at Vertex Pharmaceuticals Incorporated. Prior to that, he spent about five years as the Vice President of Research, in charge of Vertex’s Cambridge MA based discovery research. He joined Vertex in 1989, as a founding scientist. He contributed to a broad array of Vertex’s research programs, in areas of immunoregulation, inflammation, anti-infectives (anti-virals and antibacterials), oncology, neurological dysfunction and cystic fibrosis research, and was involved in countless new-project and/or technology exploration initiatives. He has contributed to the discovery of more than 30 drug candidates that have proceeded to human clinical testing, including four approved drugs. Dr. Thomson remains interested in developing innovative partnership models that complement the discovery process and the liberation of intellectual property value, especially for neglected diseases, and has participated in numerous scientific advisory roles for other companies, support groups and NGOs. Dr. Thomson received a B.Sc. (Hons.) and a Ph.D. in biochemistry from the University of Melbourne, in Melbourne, Australia. Dr. Thomson is a member of NF Northeast’s Medical and Science Committee.
Nicole Ullrich, M.D., Ph.D.
Dr. Nicole J. Ullrich is a dedicated onco-neurologist who maintains an active practice both at Boston Children’s Hospital and Dana-Farber Cancer Institute. She has a demonstrated record of successful and productive studies of acute and chronic neurologic effects of childhood cancer and brain tumors, as well as studies of neurologic sequelae and targeted interventions for tumor-related and cognitive complications of Neurofibromatosis type 1 (NF1). Dr. Ullrich serves as Primary Investigator of the multicenter NF Clinical Trials Consortium that has now opened 6 planned clinical trials as interventions for complications of NF1, including plexiform neurofibromas, brain tumors, and cognitive difficulties. With an undergraduate degree from Brown University and an MD/PhD from Yale University, Dr. Ullrich did her internship, residency and Fellowship at Children’s Hospital Boston as well as at Dana-Farber Cancer Institute in Boston. Serving as Director of NeuroOncology at Children’s Hospital Boston and Director of Neurologic NeuroOncology Dana-Farber since 2005, Dr. Ullrich holds a number of academic posts at the Harvard Medical School and 5 patents for methods of diagnosing and treating gliomas. Dr. Ullrich is a member of NF Northeast’s Medical and Science Committee.
Jessica Wolfe is a member of the Strategic Planning Committee and the Medical and Science Committee. She founded BluePond Wellness LLC, is a professional Research Associate at Harvard Medical School, Department of Physical Medicine and Rehabilitation; a Senior Research Program Advisor for Partners Healthcare System’s Center for Connected Health; as well as, involved with the development and expansion of Spaulding Rehabilitation Hospital’s Institute of Lifestyle Medicine. Jessica holds a Doctorate in clinical psychology from Columbia University and subsequently completed her Master’s in Public Health from Harvard University.