The National Down Syndrome Congress (NDSC) is pleased to announce the recently elected 2023-24 Board of Directors Executive Committee (EC) members as well as our new Interim Executive Director (ED). Sean J. Smith, NDSC president, stated, “We are excited to have Stephanie Smith Lee step in as our Interim Executive Director, her experience supporting the Down syndrome community and love of NDSC as a parent, past board member, professionally, and as a current member of our policy team all equip her to help take the NDSC to the next level. We are also excited about what this group of executive committee members, as both parents and professionals, bring to the NDSC and the community we serve.” Below, we share the names and contact information of the members of the EC and include brief bios of our Interim ED and new NDSC President.


Shortly, we will be adding bios and pictures to our NDSC website (see https://www.ndsccenter.org) allowing everyone to get to know the new EC and the roles and responsibilities they are undertaking for this 2023-24 term.

Interim Executive Director – Stephanie Smith Lee

Members of the Executive Committee- 

President – Sean J. Smith – President@ndsccenter.org

Vice President #1 –  Tony Zanfordino – tony.zanfordino@gmail.com

Vice President #2 –  Beau Brooks – beau.brooks@gmail.com

Vice President #3 –  Dana Halle – dhalle@dsfoc.org

Vice President #4 –  Jill Reffett – jillreffett@gmail.com

Secretary – David Chaplin – Secretary@ndsccenter.org

Treasurer – Garrick Batley – Treasurer@ndsccenter.org


Stephanie Smith Lee – Brief Introduction –

Stephanie is the NDSC Senior Policy Advisor and a nationally recognized disability expert with extensive public policy experience, including serving in senior Congressional staff positions. Since her daughter, Laura, was born with Down syndrome she has led many successful bipartisan disability advocacy efforts at the local, state, and Federal levels. As the Director of the Office of Special Education Programs (OSEP) in the U.S. Department of Education she was responsible for the implementation of IDEA, the Federal Special Education Law. As the former Vice President of NDSC she played a key leadership role in the successful reauthorization of IDEA in 1997 and later led the successful effort to amend the Higher Education Act to include financial aid and funding for programs for students with intellectual disability (ID). As chair of the Think College Accreditation Workgroup she led the development of accreditation standards for college programs for students with ID and now serves as President of the Board of a new accrediting agency for these programs.


Sean J. Smith, Ph.D. – Brief Introduction –

Sean is a Professor of Special Education in the Department of Special Education at the University of Kansas.  He has served on the NDSC’s Board for nearly a decade co-chairing the Education Committee. As a professor, Sean’s research interests focus on innovations and technology solutions to support struggling learners and those with disabilities, particularly interventions aligned with the Universal Design for Learning (UDL) Framework. Sean has authored over 200 books and articles, given hundreds of scholarly presentations both nationally and internationally, and serves on various boards for journals, organizations, and parent groups focused on enhancing the lives of individuals with disabilities. ​​Most importantly, Sean is the father of four children, one having Down syndrome. Nolan, Sean’s son, is a recent graduate of the University of Kansas Transition to Postsecondary Education (TPE) Program (see https://tpe.ku.edu/ ) which is one of over 300 college/university education programs for individuals with intellectual disability.