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.
Nicol is an adult living with Spina Bifida and a wheelchair user. She currently works at Brown University as an accommodations specialist at the student accessibility services office. Nicol is passionate about accessibility and inclusion at the higher education level and in the workplace. Her goal while being a board member is to advocate and help build more programs for individuals with Spina-Bifida. She also hopes to bring more programs and resources to the latinx community. Nicol is excited to provide a safe space and environment for all individuals with Spina Bifida to be seen and heard. She loves to help others find their inner confidence and independence! In her spare time, Nicol enjoys spending time with family, painting and watching movies.
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.
Linda Long-Bellil, Ph.D., J.D., is an Assistant Professor of Family Medicine and Community Health and is based at the E.K. Shriver Center/University of Massachusetts Chan 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.
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.
Alex was born Spina Bifida and started getting involved with SBAGNE a few years ago mentoring the kids during the Teen Empowerment weekends. Alex graduated Curry College in 2013 with a Communications degree and focused on Sports Broadcasting while at Curry. In his spare time he enjoys attending sporting events, seeing friends, playing cards with his family and playing with his dog Balto. While serving as a board member, his goal is to help expand the reach of all the programs SBAGNE has to offer even further than they already do while also helping the next generation as much as he can as well.
Jim is a parent of a young daughter born with Spina Bifida. He has been an active volunteer with SBAGNE for the past 4 years, whether he is fundraising through SBAGNE’s Falmouth Road Race Team or filling in for Santa Claus at the holiday party he is always trying to find ways to contribute. Jim joined the Board of Directors in 2023, is a commercial insurance broker and has a Bachelor’s Degree of Science in Finance and a Minor in Leadership Theory Studies from The University of Rhode Island. Jim enjoys spending time with his family, hiking, hunting, fishing and is an avid golfer.
Kim Farrell is a technology professional and mother of five, whose youngest son was born with Spina Bifida Lipo-Myelomeningocele. Kim has been part of the SBAGNE community since 2005 where she has actively participated on the Falmouth Road Race team and Walk-N-Roll, supported BEST weekends, and held numerous fundraising events. If you ask Kim about her passions, she will tell you her family is her world followed by her love of the Cape, concerts, cooking, and the Red Sox. While serving as a Board member, Kim hopes to share her accumulated knowledge with other families as they navigate early childhood services to guardianship. She intends to share Spina Bifida awareness across the community and look for ways to bring new fundraising opportunities and programs to SBAGNE.
She lives in Whitman with her husband, Dan and sons Ryan, Cameron, Nicholas, and Sean and just down the street from her daughter Hannah and son-in-law Joshua.
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.
Parker Smith is an adult living with Spina Bifida Myelomenigocele. He holds a Bachelor’s Degree in Sociology from Bridgewater State University. In 2021, Parker graduated with a master’s degree in public health focusing on epidemiology. In his free time Parker likes writing and performing poetry and playing wheelchair tennis. During his time as a SBAGNE Board Member he hopes to spread the importance of self-advocacy for all people affected by SB.
My name is Jan Terlaje and I am a mother to an amazing 10 year old daughter who was born with Spina Bifida. I work for Beth Israel Lahey Health as a Lead Medical Assistant. I have worked in the healthcare field for over 15 years. I so much enjoy helping others and feeling like I’m making a difference at what I do. In my spare time I enjoy watching my beautiful daughter dance, going on day trips with my daughter and husband, and spending time with my 3 dogs. I’m excited to be a SBAGNE Board member and be an advocate and educator for those living with Spina Bifida.
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.
Francesca is the eldest of three girls; she spent her childhood traveling the country with her father’s professional baseball career and during the off season you could find her playing golf, hitting the books, practicing the violin or working at her family’s Ag business. Francesca was born with myelomeningocele, complex hydrocephalus and Chiari Malformation. She is defined by her positivity, determination, and her ability to break down all barriers. She is currently earning a Bachelor’s degree in Neuroscience from Boston College. Francesca’s experiences, knowledge, and successes have allowed her to consult with organizations on chronic illness awareness, patient involvement, and self-care.
She has worked together with Executive Administration and Medical staff to enhance patient experience both at Shriner Hospital, Northern California and Valley Children’s Hospital, Madera, CA. Francesca hopes to encourage children and young adults to know their worth, believe in their future, and live this precious life to the fullest.
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.
Marketing and Communications Director
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.
Kiaryne is the mother of a 9-year-old Spina Bifida warrior and has been part of the SBAGNE community since 2022. She graduated in 2017 with bachelor’s degrees in Marketing and Operations Management. She went on to earn her Master of Business Administration with a concentration in leadership from the University of Massachusetts Dartmouth in 2020. As the parent of a child born with Spina Bifida, Kiaryne understands the significance of the awareness and programming offered through SBAGNE. One of her biggest goals for SBAGNE is to increase the organization’s diversity outreach.
Michelle is a graduate of the University of New Hampshire where she studied Recreation Therapy. She has a longstanding personal interest, and passion for the disability community, and has served people across the disability spectrum in both clinical and non-clinical settings over various capacities since she was a teenager. For the last 10 years, Michelle has had the privilege of being a full-time stay at home mom to her 3 beautiful children, including her eldest daughter Valerie who was born with Spina Bifida. Michelle is excited to join the SBAGNE team, where she hopes to use her professional skill set and life experience to support the organization’s mission of building a better and brighter future for all those impacted by Spina Bifida.
In her spare time, Michelle enjoys running (especially for SBAGNE’s Falmouth Road Race Charity team!), cooking, crafting, camping with her family, and trying her best to keep her garden and houseplants alive.