Who We Are
Our Vision: A world where the burden of neurofibromatosis does not exist.
Our Mission: To bring hope to those affected by neurofibromatosis and allied disorders.
Our Founding Story
When the five-year-old girl who had been living on the streets of Korea arrived in their home in Boston, Karen and Bert Peluso were appalled by her severe malnutrition and immediately brought her to their pediatrician. While examining her, the pediatrician seemed more concerned with the numerous coffee-colored birthmarks she had on her body. He told them that the café-au-lait spots were the hallmark of a genetic condition called neurofibromatosis, commonly referred to as NF, and warned them to watch for tumors developing along nerves on or in her body. At the end of the appointment he said, “Take her home, feed her and love her – and try not to worry about it.”
Their new daughter told them her name was Myung Ja and Bert suggested that they call her Mia, because it meant “mine” in Italian. She liked that name and as time went on, she began to thrive within the Peluso family, which included sister Kim and brothers Rob and Jon. Mia was enthusiastically welcomed into their neighborhood and community. To their dismay, Karen and Bert were unable to find much more information about neurofibromatosis, so they put that word deeper and deeper into their combined subconscious, in part because they had so much fear about what could happen to their beautiful child.
Within a couple of years, their fears became reality and Mia underwent surgery to remove a very large and destructive plexiform tumor in her abdomen caused by NF. The tumor involved multiple organs, requiring extensive surgery to remove and repair some of those organs. Following surgery, Mia’s condition worsened and she was placed on life support. However, thanks to her amazing team at Massachusetts General Hospital, Mia slowly began recovering.
This crisis in their family was a decisive moment. The Pelusos could no longer avoid the reality of NF and decided to face it head-on. With the help of friends and family, they began to raise money to increase awareness of NF and promote research. There was a groundswell of support from their close-knit community, who came out in droves to help plan road races, bake sales, and pizza parties.
With help from Mia’s doctor, the Pelusos were able to identify other parents and patients who were living with NF, and as time went on, eventually joined the National Neurofibromatosis Foundation (NNFF) where they served as Co-Presidents of the Massachusetts NNFF Chapter from 1985 to 1987. During that time, they received the NNFF’s Courtemanche Award for Leadership. (NNFF has since changed its name to the Children’s Tumor Foundation.)
In 1988, select local groups broke away from the NNFF, which led to the founding of NF Incorporated. The Pelusos were members of the founding Board of Directors of NF Incorporated (now the NF Network) as well as NF Incorporated, Mass Bay Area. Later, NF Inc. Mass Bay Area was renamed Neurofibromatosis Northeast to better describe the area served as the organization grew.
Neurofibromatosis Northeast began as a grassroots organization around a kitchen table. Our mission was “to raise funds to promote research, create awareness and provide support to NF patients and families.” A self-described “band of warriors,” the founders were inexperienced in running a nonprofit organization but driven by their passion to cure NF. Within a few years, a more formal board was developed and in 1994 that board hired Karen Peluso to be their first Executive Director. Karen served in that position until her retirement in 2021.
Today, NF Northeast is a highly regarded resource for patients, physicians, and scientists. We have provided over $3 million in research grants and have been pivotal in directing over $600 million towards federally funded NF research through our political advocacy work. We’re known as the “organization with the heart” because our focus is creating a strong, caring community that supports newly diagnosed patients and their families through every step of their journey with NF. We call it their Journey of Hope.
When Karen and Bert reflect back on that first doctors appointment with Mia, they feel fortunate their pediatrician even recognized the signs of NF. At the time, NF was frequently misdiagnosed and mistreated. There was no internet to search, limited literature on the disorder, and almost no research being done into what caused NF due to lack of funding. Thankfully that has all changed, and strides are being made in both medical and research industries. The first drug to treat NF symptoms, specifically NF-related plexiform tumors, was approved by the US Food and Drug Administration in 2020.
Sadly, NF Northeast co-founder and longtime NF advocate Bert Peluso passed away in 2023. Bert leaves behind a tremendous legacy which can be found embedded deep in the ethos of this organization and our work. He approached life with benevolence, humor, and service—spreading kindness and hope everywhere he went. The NF community mourns the loss of Bert and his steadfast commitment to finding a cure for neurofibromatosis. To celebrate Bert’s life and his passion for advancing NF research/therapies, please consider donating to the Bert Peluso Research Award.
Many advancements have been made in the fight to end NF, but there is still work to do. The Pelusos urge all NF patients, families, and friends to help in whatever way they can. Together, we can make NF a disease of the past.
Neurofibromatosis Northeast — A Timeline History
What We Do
Advocacy
Advocacy is among the major pillars of our NF Northeast vision. But what does the word advocacy actually mean? The literal definition is “the act of speaking on behalf of or in support of another person, place or thing.” At NF Northeast, we pride ourselves on being the voice for patients and families who desperately need support.
As one of the founding organizations of the NF Network, we, along with other NF organizations, created the NF Advocacy Program. Since 1996, we have worked closely with members of the United States House and Senate to secure more than $380 million for NF research through the Department of Defense Congressionally Directed Medical Research Program (CDMRP), and we have effectively requested that report language on NF research at the National Institutes of Health (NIH) be included in the Labor, Health and Human Services and Education Appropriations Bill.
In 2006 the CDMRP established the NF Clinical Trials Consortium, which has significantly accelerated the clinical trial process by recruiting patients from 25 clinical sites across the country. Continued Congressional funding through the CDMRP is vital in funding preclinical and clinical trials and finding treatments and a cure for NF and its related disorders.
In 2021, the very first drug to treat one type of NF tumor was approved by the US Food and Drug Administration (FDA). Koselugo™ (selumetinib) shrinks inoperable plexiform tumors that occur in many NF patients. The origin of the approval of Koselugo™ is testament to collaboration between the CDMRP and NIH, and it increases the urgency of research funding for NF because there are additional drugs in the pipeline that could treat other tumors that affect NF patients.
Much of the previous federal funding has gone toward studying the genetics of NF1, NF2 and schwannomatosis, basic science, drug screening and studies, as well as preclinical work. Now that several drugs are ready for clinical trials, and clinical trials in humans are very expensive, there is an even greater need to increase federal funding.
We can never take federal funding of NF research for granted because it is always at risk. In fact, the CDMRP NF research program begins every year with zero appropriations. As advocates, we must let our representatives in Congress know how important it is to continue and increase funding for NF research.
How can you become an advocate?
Simply tell your NF story! Write to members of Congress to let them know the importance of critical NF research funding and why. Our elected officials want to hear from their constituents. By sharing your personal NF story, you are helping to bring awareness and education around neurofibromatosis, tumor growth, and cancer, affecting millions of Americans, including members of the military.
What do you do once you have written your story?
Every year in February, staff and volunteers from NF Northeast travel to Washington, DC, along with other NF Advocacy partners from across the country to meet with Congressional staff to advocate for these NF research programs. We try to collect as many stories as possible and make as many connections as possible with our elected officials. We also circulate Dear Colleague Letters within the House and Senate, requesting sign-ons to show support of funding for NF research.
Would you like to learn how to conduct a meeting with your congressman?
Click Here to see a video of a role-play meeting with a volunteer and a member of Congress
Click Here for Advocacy Tool Kit with all of the tools that you need to become an NF Advocate for research.
Why has the Department of Defense Congressionally Directed Medical Research Program (CDMRP) supported NF research over the past several years?
Research has determined that the NF gene controls pathways which are directly related to pain, nerve regeneration, wound healing, inflammation and blood vessel growth, bone growth and repair, orthopedic abnormalities, amputation, learning disabilities, and behavioral and brain function. Many of these medical issues affect the military.
Traditionally, the DoD funds smaller projects with language around a particular focus. This funding mechanism often invests in young investigators with a high risk/high reward approach. A panel of researchers, scientists, and patient advocates reviews the projects.
NF research is also ongoing at numerous Institutes within the National Institutes of Health (NIH). Continued Congressional support of the CDMRP and NIH is vital in funding preclinical and clinical trials and in finding a treatment and cure for NF and its related disorders
Does Department of Defense (DoD) funding overlap with NIH funding of NF research?
Both the NIH and the DoD work collaboratively, so there is no overlap or redundancy in funding. Funding of NF research from the DoD has led to funding through NIH. Studies have shown that more than 80% of NF researchers who have been funded through DoD stick with an NF focus throughout their career. The success we have achieved so far is testimony to the partnership between grassroots advocacy groups, legislators, and the scientific community.
Click Here for Information on Clinical Trials
Advocacy Tool kit
Sample Letter – and Finding your Representative and Senators
Thank you for helping us support the NF Research Program. You may use the letter below and fill in the name of your representative. Make sure to include your name and address on the email at the bottom of the letter.
Please do it today. If NF families won’t advocate for NF, how can we expect others to do so?
Follow the steps below:
1.) Go to these links to get the contact information for your representative and senators. You can find out who they are by plugging in your zip code.
2.) Their email addresses are provided and you can copy and paste the letter below and fill in the blanks, or write your own personal letter.
3.) Email your letters, including your name and address.
Adding a personal touch to your letter is always meaningful.
The Honorable ____________
__________ House Office Building
Washington, DC 20515
Dear Congressman or Senator ____________:
As someone closely touched by neurofibromatosis (NF), I write to ask your support of two NF research programs. The first is the Army’s NF Research Program (NFRP) in the Defense Appropriations bill. The second is for inclusion of report language on NF research at the National Institutes of Health in the Labor-HHS-Education Appropriations bill.
NF involves the uncontrolled growth of tumors along the nervous system, which can result in terrible disfigurement, deformity, deafness, blindness, brain tumors, cancer and death. NF is the most common neurological disorder caused by a single gene and is more common than muscular dystrophy and cystic fibrosis combined. However, because of NF’s close connection to many common diseases and disorders, such as cancer, learning disabilities, heart disease, memory loss, and brain tumors, research on NF stands to benefit 175 million Americans in this generation alone.
The Department of Defense fills a special role by providing peer-reviewed funding for innovative, high-risk/high-reward medical research through the Congressionally Directed Medical Research Programs (CDMRP). The NFRP is a well-executed and efficient program within the CDMRP and addresses areas of great clinical need directly affecting the health of the war fighter. NF is a complicated condition closely connected to many common diseases and disorders that can lead to unmanageable pain, learning disabilities, cancer, orthopedic abnormalities, deafness, blindness, memory loss, and amputation. NF also involves inflammation similar to that involved in wound healing.
Recognizing NF’s importance to both the military and to the general population, Congress has given the Army’s NF Research Program strong bipartisan support. From FY96 through FY21, funding for the NFRP has amounted to over $382 million. The Army’s program funds innovative, groundbreaking research which would not otherwise have been pursued, and has produced major advances in NF research, including conducting clinical trials in a nationwide clinical trials infrastructure created by NFRP funding. Army officials administering this program have indicated that they could easily fund more applications if funding were available because of the high quality of the research applications received.
The modest investment in NF research has already resulted in major breakthroughs. In addition to providing a clear military benefit, the DoD’s Neurofibromatosis Research Program also provides hope for the 130,000 Americans who suffer from NF, as well as over 175 million Americans who suffer from NF’s related diseases and disorders. We must continue to invest in research and build on the successes of this program if we are to continue to advance towards treatments and cures for NF and the numerous diseases associated with it.
Sincerely,
Creating Awareness
Neurofibromatosis affects more people than cystic fibrosis, muscular dystrophy, Tay-Sachs disease, and Huntington’s disease combined, yet most people have never heard of it—we’re trying to change that.
NF’s virtual anonymity to the general public is one of the biggest challenges facing the community today. This lack of awareness has limited volunteer development, fundraising capabilities, research funding, and—most importantly—our ability to effectively serve as a resource for newly diagnosed NF patients and their families.
Awareness is a key component in increasing the focus of medical research into neurofibromatosis—which leads to both advancements in pain management and hopefully, one day, a cure.
What We Do to Create Awareness
Fundraising
We host and support numerous educational, social, and fundraising events throughout the year. These funds are used in a multitude of ways, including but not limited to: research grants, education for patients and health care professionals, and advocacy.
Public Exposure
We look for other opportunities for media exposure such as the “Neurofibromatosis Awareness Month” proclamation signings by all of the governors in the Northeast. We are active across all social media platforms and—determined to make neurofibromatosis a household word—we are passionate about our #TheWordIs campaign, which encourages people to explain the correct pronunciation of “neurofibromatosis,” therefore sparking a conversation with those who might not be familiar with the word or the disease.
Community Outreach Committee
The NF Community Outreach Committee’s mission is to educate and provide resources in local communities among NF patients and their families throughout the northeast. The group does this organically through word of mouth, working with local hospitals, reaching out to school nurses, and using social media. They also help to plan social events such as an afternoon at a ballpark, playground meet-and-greet events, and restaurant nights. For more information about joining the group, please contact NFNE at info@nfnortheast.org.
Beauty Mark Nation
Beauty Mark Nation (BMN) was created as a lighthearted and fun way to command attention, challenge public perception of skin spots, and create a high degree of visibility for the NF cause. Found mostly at fundraising events, the temporary tattoos created for BMN are the perfect way to spark a conversation and show your support for those with NF1! To learn more, click here.
What You Can Do to Create Awareness
1. Follow Us on Social Media
Follow us on your favorite social media platforms to hear the latest news, connect with others in the NF community, and stay updated on our upcoming events and volunteer opportunities. Click on your choices below:
Facebook
Twitter
Instagram
LinkedIn
Youtube
2. Participate in Our “What’s the Word?” Campaign
Record a video of yourself saying “neuro-fibroma-tosis” (do your best!). When you post your video, use the caption to challenge your business associates, friends and family to do the same. Get them to join you and have fun with it—we know it’s a tough word to say! When you post, make sure to tag NF Northeast and use the #TheWordIs hashtag.
Purchase a #TheWordIs T-shirt or sweatshirt—wearing them in public will help us spread more awareness! Shop here.
3. Share Your Story with Us
Allow us to highlight you as a fighter and NF Champion! We want to hear about your journey. For more information about how to share your story and how we use it to create awareness, reach out to us at info@nfnortheast.org.
4. Write a Letter to Your Elected Representatives
Research is crucial to finding a cure for NF, and much of NF research funding comes from Congress. It is vital that members of Congress understand the importance of funding federal NF research, and personal appeals from constituents are crucial to securing support from government officials. Follow this link to the Advocacy Tool Kit page to learn how to write a letter to your representatives encouraging them to support NF research.
5. Donate
6. Participate in NF Awareness Month
May is NF Awareness Month! Support those living with NF by participating in social media campaigns, reaching out to local officials about proclaiming May as NF Awareness Month in your state, and taking the time to speak with those around you about neurofibromatosis.
Supporting Research
To learn about our support for research programs, Click Here.
Supporting Patients & Families
To learn about resources for patients and families, Click Here.
Board of Directors
NF Northeast is governed by a Board of Directors. Within the Board there are standing committees, including the Finance Committee, Governance Committee, NF Community Outreach Committee, and the Medical and Science Committee.
John Manth, Board Chair
John Manth is the father of Leah Manth, who was diagnosed with NF2 in 2007 when she was just 7 years old. John and his family are dedicated to finding meaningful treatments and a cure for NF2. John serves on the Board of Directors for Neurofibromatosis Northeast, NF2 BioSolutions, as well as the NF Network (Vice President). Since Leah’s diagnosis, the Manth family—along with their friends and loved ones—have raised over $800,000 and sponsored 13 NF2 research studies. John is a longtime advocate for federal funding of NF research and assists in coordinating, training, and mentoring NF families attending the NF Network’s annual trip to Capitol Hill. He has extensive experience in fundraising, non-profit organizational leadership, advocacy, and NF outreach. John has written articles on a range of topics relevant to NF, and co-wrote a booklet with his wife Linda and Dr. Scott Plotkin entitled “Understanding NF2,” which was published by the NF Network. John has presented at NF symposiums and facilitated many NF family & patient discussions. He is also a passionate educator who teaches a Criminal Justice career program to high school students at Erie I BOCES, in addition to holding an adjunct professorship at Hilbert College in Hamburg, NY where he teaches undergraduate courses in Violence, Global Crime, and Comparative Criminal Justice. He holds a Bachelor of Arts degree in Criminology from University of Maryland and a Master of Arts degree in Criminal Justice and Education from Buffalo State College.
Karen Peluso, Founder
Karen has been an advocate for NF for over 40 years, and along with her late husband Bert, founded Neurofibromatosis Northeast. After their critically ill young daughter was diagnosed with NF, Karen and Bert became frustrated by the limited information available about the disorder, and because hardly any research was being conducted to better understand or treat the disease. They made a commitment to change that and began organizing fundraising events and holding information sessions. Despite numerous challenges, including pre-dating the internet, they were determined—and the organization now known as Neurofibromatosis Northeast began at their kitchen table.
Karen served as Executive Director from 1994 until her retirement in 2021. Under her leadership NF Northeast presented $3 million in research grants to scientists using funds raised primarily at events. Seeing an opportunity for federally funded research through the Department of Defense, Karen joined a handful of NF advocates to lobby Congress, and in 1996 they made their first trip to Washington, DC where they secured $8 million for NF. The NF Advocacy Network returned each following year, bringing more advocates with them, and to date has secured $425 million for NF. Karen has presented testimony before the House and Senate Appropriations Committees and continues to go the Hill as a mentor for new NF advocates.
Ben Buttrick, Secretary
Ben Buttrick, Managing Director, Global Client Relationship Management for Cambridge Associates, LLC, has been associated with NF Northeast for close to ten years as a Coast to the Cure NF Ride Committee member and rider. In addition to his volunteer work with NF Northeast, Ben is a member of the CFA Institute and the Boston Security Analyst Society, and a member of the Town of Essex Finance Committee. Ben received a Bachelor of Arts degree from Boston University. He is an avid runner and cyclist, and has a strong interest in music—doing occasional piano and vocal performances.
Andrés Lessing, Treasurer
Andrés Lessing was nine 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 developing our first website. He currently serves on the NFNE Finance Committee. Along with his father, Andrés helped organize Friends Ride for NF, a bike ride on Cape Cod which not only raised money and awareness for NF 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.
Frank Buono, PhD
Dr. Frank Buono is an Associate Research Scientist in the Department of Psychiatry in Yale School of Medicine, and the Associate Research Director at Silver Hill Hospital in New Canaan, CT. He obtained his master’s and doctorate degrees from Southern Illinois University in applied behavior analysis and completed his post-doctoral appointment in substance use at Yale University. Dr. Buono has been an active member of NF Midwest for 20 years and NF Northeast for the last two years.
Patrick Callahan, Esq.
Attorney Patrick Callahan received his juris doctor from Suffolk University School of Law in 2003 and has vast experience handling criminal law cases. Pat became involved with Neurofibromatosis Northeast approximately seven years ago, shortly after his son Timothy was diagnosed with NF1. Pat and his family immersed themselves in 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. Pat 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. As a nurse and advocate for patients, Alex has taken on the mission to fight back against NF, and has immersed herself in activities to support NF Northeast. Serving on the Coast to the Cure NF Bike Ride Committee, and participating in the Falmouth Road Race, Alex has been a very successful fundraiser. Alex also serves as a Patient Representative for the REiNS International Collaboration. Her greatest joy is spending time with her seven-year-old daughter.
Tamara Indianer, AIF, CFP
Tamara Indianer serves as the Regional Vice President at Northeast Lincoln Investment. She is a dedicated member of the NF community, attending many NF events and running the Falmouth Road Race for the NFNE team in 2020, 2021, and 2022. Tamara graduated with a master’s degree in Middle Eastern studies from Brandeis Universities, traveling within the US and abroad. However, a career change brought Tamara into the financial services industry, after watching her father, older sisters and brothers help many people through service and philanthropy. She is fully licensed and achieved her CFP® certification and AIF® designation. She currently helps Lincoln Investment manage the transition and integration of new offices and advisors into their region, and oversees the administration, operations, and finances of the New England branch.
Justin T. Jordan, MD, MPH
Dr. Justin T. Jordan is a member of NF Northeast’s Medical and Science Committee, and as an active advocate for funding and support for patients and research, visits Beacon Hill and Capitol Hill routinely. Dr. 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 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.
Theresa Owhady
Theresa Owhady’s introduction to neurofibromatosis began when her daughter Olive was diagnosed with NF1 at 3 months old. Given Olive’s mutation was spontaneous, Theresa had not been familiar with NF until that time, but quickly worked to build a strong and supportive community of physicians and parents. Theresa is involved with NF Northeast advocacy work to secure medical research funding in Washington D.C. and has worked to drive NF Northeast’s inaugural Steps2Cure NF walk in New Jersey. Theresa’s professional background spans 20 years in Account Management and Sales Operations at professional services and consulting firms, focused on Private Equity & Financial Services clients. She has been with Ernst & Young for over 10 years, and has a Bachelor’s degree from Fordham University. In her free time, Theresa loves gardening, cooking, meditation, being outdoors, community involvement, and spending time with Olive where they live in Paramus, NJ.
Kristina Rath, MD
Dr. Kristina Rath graduated from Yale University with a Bachelor of Science in Mechanical Engineering. She earned her medical degree from the University of Pittsburgh Medical School. She completed her internship and residency in Obstetrics and Gynecology at Yale-New Haven Hospital. Dr. Rath is a Clinical Instructor in the Department of Obstetrics and Gynecology at Yale University School of Medicine and works in private practice gynecology in the New Haven area. Dr. Rath is the mother of three children. Her youngest daughter, Jane, was diagnosed with NF1 as an infant. Jane was one of the first children in the world to take the MEK-inhibitor selumetinib in a clinical trial in 2014; in 2020 the drug became the first medication ever approved by the FDA for neurofibromatosis. Dr. Rath is an avid runner—Since 2009, she has run dozens of marathons and raised over a quarter of a million dollars for NF charities. She has been a member of the Children’s Tumor Foundation Volunteer Leadership Council since its inception in 2015, and has served on the Medical Board of the Childhood Tumour Trust in the United Kingdom since 2019.
Lori Ryan
Lori has been an active volunteer and advocate for NF Northeast for over 20 years. She was former Chair and Secretary of the Board of Directors and currently chairs the Medical and Science 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 and has traveled to Capitol Hill with the NF Advocacy Network to advocate for NF research funding while serving 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 is the Director of Clinical Quality at Dyne Therapeutics.
Marybeth Shaw
Marybeth Shaw has been an avid supporter of NF Northeast since 2007 when her then 7-year-old niece was diagnosed with NF2. She has been an active member of the Run4Leah/CureNF2 Team, participating in the Buffalo marathon, volunteering, writing the team blog, and creating the annual team newsletter to raise funds for NF2 research and expand awareness. Marybeth can also be found striding along with Team Leah at Steps2Cure NF in Western New York. A long-time patient advocate on Capitol Hill, Marybeth now serves as a mentor to new advocates and is a member of the NF Network Advocacy Committee. She holds a bachelor’s degree from Boston College and is retired from the consumer products testing and inspection industry where she spent over 20 years helping manufacturers and retailers comply with US and international consumer product safety regulations.
John T. Shea
John Shea is a member of NFNE’s Governance Committee and the Finance Committee. He has had a 30-plus-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. He has also served as interim CEO of a number of troubled facilities and effected turnarounds and/or sales of assets, established strategic relationships, 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 the Massachusetts Society of Certified Public Accountants, and has an MBA from New Hampshire College and a Bachelor of Science in Accounting from Bentley College.
John A. Thomson, PhD
Dr. John Thomson is a member of NF Northeast’s Medical and Science Committee. He 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. Dr. Thomson joined Vertex in 1989 as a founding scientist, and contributed to a broad array of their research programs, in the areas of immunoregulation, inflammation, anti-infectives (antivirals and antibacterials), oncology, neurological dysfunction and cystic fibrosis research. He was involved in countless new projects 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 Bachelor of Science (Hons.) and a PhD in biochemistry from the University of Melbourne (Australia).
Nicole Ullrich, MD, PhD
Dr. Nicole J. Ullrich is a member of NF Northeast’s Medical and Science Committee and Co-chair of the Clinical Care Advisory Board of the Children’s Tumor Foundation. Dr. 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 NF1. Dr. Ullrich serves as Primary Investigator of the multicenter NF Clinical Trials Consortium that has now opened 12 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 Neuro-Oncology at Children’s Hospital Boston and Director of Neurologic Neuro-Oncology at Dana-Farber since 2005, Dr. Ullrich holds a number of academic posts at the Harvard Medical School and five patents for methods of diagnosing and treating gliomas.
NF Northeast Staff
Sharon Klein
Executive Director
An Executive Director with more than 16 years of nonprofit fundraising experience, Sharon is extremely passionate about finding cures for rare diseases. She has held numerous leadership roles in executive alignment and collaboration, fundraising, management, and patient advocacy and programs.
Serving more than 12 years at The Leukemia & Lymphoma Society (LLS), Sharon led philanthropy and patient initiatives for the Massachusetts and Rhode Island chapters, where she served first as the Director of Development and then later as Executive Director for both chapters. Sharon is most proud of her accomplishments at LLS, where under her leadership, the chapters raised more than $6 million annually to fund research and patient programs.
In 2018, Sharon decided to switch gears from working at a national nonprofit to a startup organization. Her curiosity about science led her to a senior leadership role at the Institute for Protein Innovation (IPI), a group focused on creating synthetic antibodies and developing new therapies for people with rare diseases. Having been the only non-scientist at IPI, she harnessed the opportunity to teach the lab team about fundraising, and how the work in the lab could be translated into a story that would motivate donors.
Sharon is married and has teenage twins, Ava and Gavin, who are the center of her universe. She loves the arts, and when not attending a music concert or track meet, she enjoys taking flamenco dance lessons or going to see a musical or dance show with her daughter.
Jenny McDonald
Gift and Data Coordinator
Jenny arrived at Neurofibromatosis Northeast in summer 2018 to restart her 15-year donor relations career, which had begun in higher education. At NF Northeast she gratefully records and acknowledges the generosity of the NF community. The tributes that arrive in the mail and through cyberspace each day are a testament to the dedication of so many to finding a cure for NF. Making sure those fighters know how much NF Northeast appreciates their efforts is an honor and a privilege. Outside of the office, Jenny volunteers in her children’s elementary school library and moonlights as a troop leader to 10 rambunctious Girl Scouts. Unsurprisingly, Thanks-A-Lots are her favorite Girl Scout cookie.
Catherine Mooney
Digital Marketing Manager
Catherine joined the NF Northeast team in November 2021 and is responsible for the strategic direction of all digital marketing efforts, including social media, website management, and brand identity. Catherine graduated from Northeastern University in 2019 after multiple internships in marketing & PR, the last of which was at Samuel Adams, where she fell in love with craft beer. Working with NF Northeast is the culmination of years of work within the NF community, since Catherine has fundraised and advocated for NF since 2007 when her cousin was diagnosed with NF2. Outside of work, Catherine enjoys visiting local breweries, reading outside, and going on hikes with friends.
Anne Patterson
Director of Patient and Clinic Outreach
Anne brings a wealth of experience to NF Northeast, including previous work with medical professionals and government agencies. Her focus has been working with disadvantaged youth and the disabled in the nonprofit sector. She served as an Employment Specialist at the Research Foundation of the State University of New York as well as at Maine Medical Center. Born and raised in Rochester, Anne currently resides in Western New York. In her free time, she enjoys spending time with her husband Dan, their three teenage daughters, and their two labradoodles (they are the laziest office “staff” in the world!). She loves everything outdoors – skiing, gardening, cycling, paddle-boarding and hiking!
Kimberley Trainor
Operations Manager
Kimberley joined the NF Northeast team in August 2021. For over 20 years, she has worked in the financial and technical industry. Kimberley lives in Burlington, MA with her husband Chris and when she isn’t working, you can find her traveling the world and enjoying hiking, biking, and other outdoor activities.
Financials
According to audited financial reports, our functional expenses are broken down as shown.
We have twice been featured in the Catalogue for Philanthropy, where we are described as “a highly efficient and worthy medical research charity in which you, too, can make a difference.”
For more information about our financials, please see GuideStar.