NF Northeast is governed by a Board of Directors. Within the Board there are standing committees which include: Finance Committee, Governance Committee, NF Families and Community Committee and Medical and Science Committee.
In addition to being Chair of the Board of Directors, Lori Ryan chairs the Medical and Science Committee and has served on the Strategic Planning Committee. She is the founder of the Steps2Cure NF walk/run in Wakefield, MA, and she initiated and oversees the NF Scholarship Program. Lori represents NFNE at scientific meetings as well as the Mass Biotech Council. She has traveled to Capitol Hill with the NF Advocacy Network 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.
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 Advocacy Network 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.
Bob Ryan chairs the Finance and Administration Committee. He participates in many of NFNE’s events in particular the Coast to the Cure Bike Ride and the Steps2Cure NF Walk/Run. Bob volunteers for other charities and enjoys coaching his children’s athletic teams. Bob is Senior Vice President, Wealth Management for The RGL Group at UBS. He holds a Bachelor of Arts degree in Accounting and Computer Science from University of Massachusetts at Lowell.
Attorney Patrick Callahan was born in Salem, Massachusetts and raised in Danvers, Massachusetts. He graduated from Bishop Fenwick High School and from Tufts University. In 2003, he received his juris doctorate from Suffolk University School of Law. Attorney Callahan has vast experience handling major felonies and misdemeanors throughout the state of Massachusetts on charges that vary from drunk driving and gun possession charges to domestic assault and battery and drug possession and distribution. He became involved with Neurofibromatosis Northeast approximately seven years ago shortly after his son Timothy was diagnosed with neurofibromatosis type 1 (NF1). Pat and his family immersed themselves into the various fundraising opportunities NFNE has to offer in order to learn more about Tim’s diagnosis and to feel supported by others affected by neurofibromatosis. He and his wife Kerri have become familiar faces at many NFNE events and are always ready to provide support to patients and families who, like themselves, had to face this frightening diagnosis.
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 is the Chairperson of the NF Families and Community Committee. Alex also serves as a Patient Representative for the REiNS International Collaboration, and recently graduated from nursing school. Her greatest joy is spending time with her 6 year old daughter.
Justin T. Jordan, MD, MPH
Dr. Justin T. Jordan is an Assistant Professor of Neurology at Harvard Medical School and a neuro-oncologist in the Massachusetts General Hospital Family Center for Neurofibromatosis and Pappas Center for Neuro-Oncology, where he also serves as the Clinical Director. Dr. Jordan cares for patients with neurofibromatosis and allied disorders, as well as those with primary and metastatic brain tumors. He has a particular interest in the investigation of novel molecular testing and on novel therapies, and has served as the site principal investigator on several such clinical trials. He is involved nationally in developing and refining treatment guidelines to optimize quality of NF care, and sits on the Clinical Care Advisory Board of the Children’s Tumor Foundation. Dr. Jordan is an active advocate for funding and support for patients and research, and visits Beacon Hill and Capitol Hill routinely.
Rob’s brother, Richard, was diagnosed in 1987 with neurofibromatosis type 1 while they both attended Northeastern University. Sadly, Richard passed away on August 10, 2017 at the age of 52 due to complications from his NF. Before he passed away, Rob helped his brother start a blog about living with NF and purchased the domain www.nfnortheast.org as a platform to share the blog. Unfortunately, the blog was never completed, but Rob and his family generously donated the domain name to NF Northeast, and the website is now the home to the online presence of NF Northeast. An avid golfer, Rob has played in the International Golf Tournament and been a sponsor of the Fall Golf Classic, and he is currently helping to organize the Driving Out NF golf tournament in Connecticut. Rob recently hosted a fundraiser in his home to help Dr. Frank Buono launch a new NF clinic at Yale New Haven Hospital, of which NF Northeast is a supporter. Rob has been active in our advocacy efforts by reaching out to CT Senators Richard Blumenthal and Chris Murphy requesting support for continued federal funding of medical research for NF. Professionally, Rob is a Regional Sales Manager for Zscaler, a global cloud-based information security company.
He and his wife, Christin, reside in Branford, CT.
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). He is a Patient Representative for the REiNS International Collaboration, and has lobbied Congress for federal funding of NF research with the NF Advocacy Network. 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.
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 Network Advocacy Program to advocate for federally funded research. John also sits on the board of the NF Network and he recently joined the board of NF2 Biosolutions. 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.
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. John sits on NFNE’s Governance Committee and the Finance Committee. 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.