Board of Directors & Staff
Amie is an adult with Spina Bifida living in Massachusetts with her husband, their one-year-old son, and two cats. She was born with Spina Bifida myelomeningocele and has had several SB-related surgeries. She has a background in Elementary Special Education, and has a Master’s Degree in Reading Specialty. Amie worked in the field of education for ten years before becoming a stay-at-home mom in 2020. She enjoys reading, crafts, traveling, and spending time with her young son. Her goal while serving as Chair of the Board is to increase Spina Bifida awareness, advocate for the community at state and national levels, and to enhance programming for adults with SB across New England.
Linda Long-Bellil, Ph.D., J.D., is an Assistant Professor at Commonwealth Medicine/University of Massachusetts Medical School. She conducts research and policy analysis on issues related to health care, including reproductive health care, and long-term services and supports issues affecting people with disabilities. She also teaches in the Shriver Center’s Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program and educates current and future health professionals about providing quality care to people with disabilities.
Brendan joined Team IMPACT in June 2021 and serves as the National Director of Finance. Team IMPACT matches children facing serious illness and disabilities with college sports teams, creating a long-term, life changing experience for everyone involved. Prior to Team IMPACT, Sullivan enjoyed a successful tenure as a college athletic administrator at three institutions – Stonehill College, College of the Holy Cross, and Boston University. Brendan is an adult living with Spina Bifida, who previously served an eight year term on the Board of Directors from 2001-2009; including two years as Chair. He is a graduate of the University of Notre Dame and also possesses an MBA from Boston College. Brendan lives in Charlestown with his wife Sara and their daughter Emma.
Lauren is the host of the “Lattes with Lauren” Podcast where she talks about and interviews other women on all things disability, motherhood, and faith related. She was born with Spina Bifida and has used a wheelchair since she was 20, due to surgery complications. She has her Bachelor’s degree in Healthcare Management and is a public speaker. She is passionate about disability rights, mental health, and the challenges she has faced being a mother with a disability. She is active within her community as a PTO board member of her children’s elementary school, a member of the leadership team of her local MOPs mom group, and is excited to now be a SBAGNE board member. She hopes to bring more awareness to the organization and to help more people with Spina Bifida. She lives in New Hampshire with her husband and their two young children.
Immediate Past Chair
Amy Bois is a parent of a teen-aged boy with Spina Bifida, Amy joined the board in 2017 and is the incoming Chair. Professionally Amy is a Brand Marketing Manager, AFAA Certified Personal Trainer & Adaptive Fitness professional. She is an influencer within the Adaptive Fitness community working with her son, providing Fitness For All on her platform @fitwithamyb on Instagram.
Ashley Birch earned both her BSN and MSN at Regis College and has been a nurse practitioner at Boston Children’s Hospital (BCH) since 2015, where she has worked in both inpatient and outpatient neurosurgery. As a nurse practitioner at BCH Ashley has focused her practice on caring for patients with Hydrocephalus and Spina Bifida and has been privileged to work in the multidisciplinary Spina Bifida clinic. She was awarded a global nursing fellowship in 2019 and is using this fellowship to focus on those impacted by Spina Bifida and Hydrocephalus in Africa and Asia. As a member of the SBAGNE board she hopes to take the tools and knowledge she has learned in these roles and use them to promote awareness and to advocate for those affected by Spina Bifida closer to her home in Greater New England.
Nathan has been involved in SBAGNE since he was a little kid. He is married to his wife Julia who he met at a SBAGNE event when they were 5! They have been friends ever since and recently celebrated their 1 year wedding anniversary. Nathan is very interested in sports and currently plays Sled Hockey. He is also currently enrolled in Realty school to obtain his Salesperson license.
Tom was born with Spina Bifida Myelomeningocele and is a commercial real estate broker at Kelleher & Sadowsky where he works representing tenants and landlords in the leasing and acquisition of commercial properties. He has a background in sales and operational management and received a BS in Business Management with a minor in Marketing. He enjoys sailing, golfing, reading, and spending time with his cat who is fittingly named Myelo. His goal while serving as a Board Member is to increase awareness, grow organization fundraisers, and focus on mentoring and the development of the SBAGNE mentor program.
Jamie is a parent to a young child born with Spina Bifida. She holds a bachelors degree in accounting and has worked as a federal examiner for financial institutions for many years. She has been an active volunteer with SBAGNE for the last few years, helping with events in her home state of Maine.
Mary has 20 years of pediatric nursing experience. She is currently working as a pediatric nurse practitioner at a primary care office in Bridgewater, MA, and for Boston Children’s Hospital, specializing in the treatment of patients with blood disorders.
Mary’s first child was born with spina bifida. She and her husband became involved with the SBAGNE community shortly after his birth as a way to connect with other people living with spina bifida. Since then, they have lead an annual fundraising event through the McCourt Foundation to support SBAGNE’s mission (Liam’s Lead Outs).
Mary lives in Hingham, MA with her husband and two boys. In her spare time, she enjoys yoga and good music.
Steven is the father of an amazing teenage girl with Spina Bifida who is also deaf. Steve is the owner of HM Management, LLC, a Massachusetts based property management company. He has also been involved in local government for nearly 5 years with the Norton MA Planning Board, and has served as chair of the Planning Board. Prior to starting HM Management over a decade ago, Steven worked his way though UMass as a full time accountant before eventually relocating to Florida where his daughter was born. His family moved back to Massachusetts for the superior medical services. He enjoys spending time with his wife Susan and daughters Jasia and Kiley in their home in Norton MA.
Jennifer Leidner is mother to a typically developing high schooler and an elementary school aged child with Spina Bifida. Jen joined board in 2021 after nearly a decade of experiencing the benefits of learning and connecting through SBAGNE. Professionally, she is licensed professional engineer specialized in waterfront environmental remediation. In her free time, she enjoys downhill skiing with her family, volunteering for various local non-profits and helping others advocate for their children.
Kristin is the creator of Spina-Beautiful.com; a web-based platform that encourages people living with Spina Bifida to share their stories in an inspiring way. She has a background in Marketing, Business, and Early Childhood Intervention. Kristin is honored to be serving on the adult advisory committee, along with the state and federal advocacy efforts of the National Spina Bifida Association. Kristin herself was born with Spina Bifida Myelomeningocele, which allows her to have a great understanding and appreciation of just how important the work that SBAGNE facilitates. Her greatest achievement thus far, is being a mom to her daughter, Louise. While serving as a board member, Kristin’s biggest goal is to create an emotional connection with others by helping support and uplift the local Spina Bifida community.
Drew is the proud father of an amazing young boy who was born with Spina Bifida. He is a career firefighter, emergency medical technician and certified fire inspector. Over his 16 years as a firefighter, he has also served as a labor representative and Treasurer for his local union. Drew has spent time working with the youth of his community both as a coach and mentor for parts of the last 20 years. He holds a Bachelor’s degree in Justice Studies from Roger Williams University in Bristol, RI where he resides with his wife and son. Drew understands the demand on a family when a member has complex medical needs and he hopes to be a useful resource for other families as they navigate their own journeys.
Helena (Lena) Williamson is a long-time SBAGNE member and a young adult living with spina bifida. She is an undergraduate student at Northeastern University, pursuing a BS in Psychology with minors in Health Science and Law & Public Policy. Lena also works for You’re With Us!, a non-profit and DDS provider that specializes in creating inclusion opportunities for young adults with disabilities. In her free time, Lena enjoys doing art, spending time with her dog, Logan, and paralympic swimming.
Dr. Stuart Bauer, M.D.
Emeritus Board Member
Dr. Stuart Bauer is a senior associate in Urology at Boston Children’s Hospital and has devoted his entire career to understanding lower urinary tract function in children with spina bifida. A number of years ago he instituted the use of clean intermittent catheterization in these children early in life in those who it was determined would benefit from this regular emptying of the bladder. This revolutionized how many of the children with myelodysplasia have been managed nationally and internationally since that time. He has served on the SBAGNE Board for the past 8 years and continues to care for children with bladder dysfunction secondary to this neurological condition.
Jean Bertschmann joined SBAGNE in July 2019 and is honored to be part of the Spina Bifida community. Jean has over 20 years of leadership experience in nonprofits, as well as in local and regional government. She served for 9 years on the Hopkinton School Committee, and currently serves as a Commissioner on the Metrowest Commission on the Status of Women. Jean has also served on multiple boards of mission-driven, direct service nonprofits.
Jean lives in Hopkinton, MA with her husband and 4 daughters. She is an avid quilter, reader, and community volunteer.
Laura Lambert is the Operations Manager for SBAGNE. She is deeply involved in SBAGNE programs, communications, outreach and fundraising. Her background is documentary videography, journalism, anthropology, and communications and she has spent her career in the nonprofit sector.