Who We Are

Family at Spina Bifida fundraising event.

Serving the Community

Spina Bifida Association of New York State (SBANYS) is dedicated to serving and supporting every person and family impacted by Spina Bifida. We do this by offering programs, resources, education, services, and support; while advocating for the community on the local and federal level. Annually, the Association typically hosts over 30 in-person and virtual programs and responds to over 2,000 consumer and provider requests for assistance. Many of our programs are in collaboration with our Spina Bifida Chapters across the United States, linking the community as a whole. We look forward to pursuing our mission and enhancing our support for all those impacted by Spina Bifida with your help!

Our Mission

To build a better and brighter future for all those impacted by Spina Bifida.

Our Vision

We envision a world where everyone impacted by Spina Bifida is accepted and thrives.

Our Values

Support | Health & Wellness
Awareness | Respect & Dignity
Empowerment

Our History

The Association was formed in 1993 by a small group of local parents whose children were born with Spina Bifida. This core group of parents met through a local Spina Bifida clinic and volunteered to support a handful of local families in the Capital District. They then went on to hire their first part-time Executive Director in 2001. In 2007, the Association moved into its first official office space in Soch Plaza. 

In 2022, the organization officially changed its service area from Northeast New York to all of New York State. The organization was then granted a name change to meet the scope of consumers and services provided and officially updated its name to Spina Bifida Association of New York State. Shortly after the Association moved to a new office to meet the depth and breadth of services provided by the organization.

As of 2023, the Association served over 400 families, including adults with Spina Bifida, young children and their parents, siblings and worked with hundreds of service providers. We have grown to include both full-time and part-time employees along with numerous interns. Our team consists of individuals with and without Spina Bifida, including family members and professionals specializing in advocacy, social work, marketing, and nonprofit management.

Our Year in Review

Meet Our Team

Our Interns

Intern headshot.
Angela Marra
SBANYS Internship Program
Intern headshot.
Francis Lee-Ciano
SBANYS Internship Program

Our Board of Directors

Officers

Chair – Joe Slaninka 
Joe lives in Long Island, New York and works at Henry Viscardi School. His love of wheelchair athletics led him to his position there as a Wheelchair Basketball Coach and Assistant Teacher. In his spare time he participates in adaptive Crossfit, surfing, scuba diving, skydiving, acting, and modeling. As an adult living with Spina Bifida, he is a perfect representative and disability advocate for the Spina Bifida community!

Chair Elect – Michelle Miller
Michelle lives in Albany, New York and works at the Center for Disability Services (CFDS). Michelle is the Program Administrator there for individuals with developmental and/or intellectual disabilities.As an adult living with Spina Bifida, she also lends her expertise and support to the NYS Agency for Disabled. In her spare time she loves to dabble in photography and is an avid reader of mysteries and American history. She is also a passionate Red Sox fan! 

Immediate Past Chair – Jim Dunham
Jim lives in Saratoga Springs, New York and is a retired Elementary Principal and Special Education Teacher. His organizational skills, attention to detail, and background in special education has consistently positively increased the breadth and depth of the services provided by the Board during his time served in leadership. In his spare time he enjoys hiking, kayaking, participating in Camp Chingachogook, and is an enthusiastic New York Yankees fan!

Treasurer – Jessica Murcin
Jessica lives in Albany, New York and is a Certified Public Accountant (CPA), focusing on larger commercial entities and audits. Jessica brings an expertise and knowledge of non-for-profits, financial accounting, Quickbooks, and preparation of Form 990’s to the Board. In her spare time she loves to plan events, meet new people and network, and has many years of prior board experience.

Secretary – Diane Skibinski 
Diane lives in Scotia, New York and is a Speech-Language Pathologist who recently retired from the Scotia-Glenville School District. She brings a range of specialities to the board which include, but are not limited to: Medical/rehab and home care setting specialist, Event and fundraiser organization, and musical theatre and choreography. She also loves to play piano, guitar, draw, read, and is interested in photography.

Members

Kevin Chamberlain 
Kevin lives in Glenville, New York and specializes in management consulting and research and administrative software. He is one of the Association’s founding members and is a parent of an adult living with Spina Bifida. He brings expert technical skills as part of his service to the Board and has a Bachelor of Science degree in math and MBA in finance. In his spare time he loves to travel, read, and spoil his grandsons.

Chris Darby-King
Chris lives in Glenville, New York and is an Occupational Therapist, Yoga Fitness Instructor, and Calligrapher. Chris is one of the Association’s founding members and is a parent of an adult living with Spina Bifida. Chris brings her knowledge of navigating the medical community to the Board, as well as her expertise in hands on healing, as a Certified Healing Touch Practitioner with a certification in Reiki Level 1 and 2. 

Paul Lukasiewicz, III
Paul lives in Rotterdam, New York and works for the Department of Tax and Finance in the Financial Services Unit. Paul also has a bachelor’s degree in Business Administration. As an adult living with Spina Bifida, he brings the necessary energy, ideas and knowledge that comes with personal experience. Paul is happily married and enjoys watching and playing sports and cooking for himself and his significant other. 

Abby Mundell
Abby lives in Ballston Lake, New York and worked in several roles at Northeast Parents and Child Society since 2001. Abby is also a certified Peer Advocate/Trainer through the Child Neurology Foundation. She bring personal knowledge to the Board as a Member of the Parent Advisory Board for the Spina Bifida Clinic at The Children’s Hospital of Philadelphia. In her spare time she loves spending time swimming and dancing with her daughter who is a child living with Spina Bifida. 

Dave Wentworth
Dave lives in Scotia, New York and worked in Finance at General Electric for 38 years. He has a MBA in Finance and is an expert in financial analysis, reporting, and systems. He brings a breadth of skills and talents in accounting and fundraising to the Board. In his spare time he loves to participate in tennis, pickleball, hiking, biking, traveling, and photography.

Andrew White
Andrew lives in Richmond, Virginia and owns Hedge Fund – Awaken Capital LLC. Andrew is an expert in Hedge Fund and Retail Investment Management. He is also highly skilled in writing and fundraising. In his spare time he loves to spend time with his three daughters, walk, read, and write books and articles. He is also an accomplished musician and plays the saxophone.