Board of Directors & Staff
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.
Amie is a full-time tutor with Commonwealth Learning Center in Danvers where she works with students with learning disabilities, ranging from elementary school to high school. She has a background in Elementary Special Education and Psychology, and received a Master’s Degree in Reading Specialty. Amie was born with Spina Bifida myelomeningocele and has had several SB-related surgeries. She enjoys reading, traveling, and spending time with her husband and their two cats. Her goal while serving as a Board member is to increase awareness, advocate, and facilitate meaningful connections between members of the Spina Bifida community of all ages.
Brendan Sullivan is the Senior Associate Director of Athletics at Boston University, an NCAA Division I institution that sponsors 24 sports. In his role, Brendan oversees all financial affairs, facilities and operations as well as marketing and communications. 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.
John was born and raised in Detroit and attended Michigan State University. Upon graduating John moved to Chicago where he worked a variety of service jobs while getting his M.B.A. in Marketing from the University of Illinois at Chicago Circle. John and his wife Amy moved to Franklin, Massachusetts in 1988. John spent the next 17 years in sales and business development, first in consumer products for the Hoover Company and R.G. Shakour, then moving to the high tech industry in the mid-90’s to work for Cabletron, Silknet and finally Kana. John retired in 2005 to become a full time stay-at-home dad to his two children Madison and Evan. John has always, and will continue to, serve as a volunteer for a variety of activities in the community.
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.
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.
Dr. Robert Burke
Dr. Robert Burke, MD, MPH is a primary care pediatrician whose practice for 40 years has been on the care of children with physical and developmental disabilities. He headed the Primary Care Program for Children with Special Needs and the Spina Bifida Program at Hasbro Children’s Hospital in Providence, Rhode Island. He has been associated with SBAGNE and the national Spina Bifida Association for over 10 years. He recently completed an 8-year membership on the executive council of American Academy of Pediatrics’ Council on Children with Disabilities, He co-authored the Academy’s guidelines on Providing a Primary Care Medical Home for Children and Youth with Spina Bifida with Dr. Greg Liptak. Dr. Burke continues his practice at Women & Infants Hospital and the Tavares Pediatric Center in Providence, Rhode Island.
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.
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.
Enock grew up in Patten, a small town in northern Maine, and now resides in Bethel, Maine. As a child with Spina Bifida, Enock had to learn to do things differently than others but with the use of adaptive equipment and help from friends and family, he has had a very full life.
He has had the opportunity to experience a lot of things that people with two working legs may not even try. Enock is an avid rock climber and skier, as well as active in many other sports including tennis, basketball, paragliding and skydiving. Through an internship related to his studies in computer science he was able to travel across the United States in 2016 and visit some of our most cherished outdoor spaces including many national parks. He culminated his internship experience in California with a 5 day ascent of “Zodiac” on El Capitan in Yosemite National Park, which was filmed by Craig Muderlak for a movie aptly named “Enock”.
Despite what some may call a setback in life he has made it his mission to inspire others to get out and try things and experience as much in life as they possibly can. All of his adventures can be followed at his blog: www.gobeyondthefence.com
Sarah Haywood is a woman living with Spina Bifida from Portland, Maine. She holds a Bachelors of Science degree in Community Recreation and currently serves on the board for the Spina Bifida Association of Greater New England as well as several boards at the national level. In her spare time, she enjoys traveling the world with her partner, Keegan, and has a small business painting custom pet portraits. Sarah is honored to join the board and hopes to create more support for individuals and families affected by Spina Bifida 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.
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.
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.