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.

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.

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.

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.

Dr Bani Hani earned a medical degree from Jordan University of Science and Technology in Jordan. Dr Bani Hani completed a residency in Urology at the Mayo Clinic in Rochester, Minnesota, followed by fellowship training in Pediatric Urology at Indiana University in Indianapolis. With over 17 years of clinical experience in pediatric urology, Dr Bani Hani is board certified by the American Board of Urology and holds added certification in Pediatric Urology. Dr Bani Hani is also a fellow of the American College of Surgeons. In addition to clinical practice, Dr Bani Hani serves as the urological director for the Spina Bifida and Transitional Care Clinics at Yale New Haven Hospital. Dr Bani Hani has a special interest in managing children with neurogenic bladder and bowel, providing care for their evolving urological needs as they age. Dr Bani Hani’s clinical research centers on outcomes related to quality of life in children with neurogenic bladder and bowel. Through compassionate care, leadership, and research, Dr Bani Hani is dedicated to improving the lives of children with complex urological conditions.

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.

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, son-in-law Joshua and granddaughter Elle.

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.

Ann Paris, DNP, CPNP-PC, is a pediatric nurse practitioner at Boston Children’s Hospital Center for Spina Bifida and Congenital Spinal Cord Disorders. Ann’s clinical and scholarly work centers on early-age education, family empowerment, and the promotion of self-care skills for children managing chronic conditions. Her passion lies in helping young patients build confidence, autonomy, and lifelong health habits through developmentally tailored education and collaborative care. Ann is passionate about family-centered care and is always exploring new, creative ways to connect clinical care, patient education, and community support for kids with spina bifida. She serves as a board volunteer with the Pediatric Nursing Certification Board (PNCB), contributing her expertise to advance credentialing standards and support excellence in pediatric nursing practice. Outside of work, Ann loves a good run, exploring new restaurants, and enjoying the beautiful chaos of life with her husband, Steve, their two kids, Nolan and Rose, and their dog, Remy—who firmly believes he’s the third child.

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.

Jabraya Tanksley is native of Upstate New York who was born with Spina Bifida. In 2009, she relocated to Rhode Island . She is passionate about nurturing the next generation, and currently works as a mentor at The Children’s Workshop, where she supports teachers in education and classroom management. Jabraya is currently pursuing her Bachelor’s Degree in Organizational Leadership and Change at College Unbound, with plans to graduate in the spring of 2025. She is also the founder of The Spina Sisters Empowerment Collective, a support group dedicated to women of color with Spina Bifida. With its inception in January she is a fierce advocate for disability equality, especially in the early childhood education arena. Jabraya is a Sunday School teacher and assists with the youth department at her local church, demonstrating her commitment to both education and aiding to develop the next generation with a solid foundation and love for God.

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.

Julie Yindra is retired after a 32-year career in education. Most recently, she was Director of Student Access Services at Hofstra University. Her career in education includes 24 years in higher education and 8 years as a classroom teacher at the middle and high school levels. She earned a bachelor’s degree in English from Guilford College, and a master’s degree in special education from the University of North Carolina. Julie is active in the disability rights community and has presented lectures and workshops around the country on a variety of topics related to disability, higher education and transition. She devotes time to non-profit service for disability and health related organizations, serving on the Board of Directors of the Spina Bifida Association from 2004 through 2013, and is currently serving a 6-year term on their Professional Advisory Committee.

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.

Drew is a parent of a child living with Spina Bifida and looks forward to serving and supporting the individuals and families in this wonderful community. He is a former SBAGNE Board member where he served on the finance and governance committees and participated in programming and fundraising, including running the Falmouth Road Race. Professionally, he was a first responder for over 20 years, while also serving in the public sector as a human resources coordinator. He spent over a decade serving on the Union’s Executive Board, with time as the organization’s Treasurer and serving on its negotiating committee. He is a graduate of Roger Williams University. Drew resides in RI with his wife and son and is an avid Celtics and Red Sox fan.

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.