News & Events

National Down Syndrome Congress (NDSC) Announces 2024 Award Winners

The National Down Syndrome Congress (NDSC) is pleased to announce the recipients of the annual NDSC awards that will be presented at the NDSC Convention in Phoenix on July 27, 2024. Each of these individuals and organizations are outstanding in their service to and efforts on behalf of individuals with Down syndrome. We congratulate these awardees and thank them for their dedication and impact.

The Affiliate Group Award is awarded to the Down Syndrome Association of Central Oklahoma (DSACO), located in Oklahoma City, Oklahoma. This award recognizes an affiliate group that has performed outstanding service on behalf of people with Down syndrome and their families. Affiliate groups are judged for this award on advocacy services, relationship to the NDSC, support to families, fundraising activities, and local and regional programs and services and community activities. The individual who nominated the DSACO shared that, “Since 2000, the Down Syndrome Association of Central Oklahoma (DSACO) has been raising awareness and providing resources, as well as promoting acceptance and inclusion for people with Down syndrome. They have provided education and advocacy to the State Superintendent, Mayor of Oklahoma City, students in family sciences at a local university, and more.” Sarah Soell, the association’s Executive Director, will be accepting the award on the group’s behalf.

The Christian Pueschel Memorial Citizen Award is awarded to Heather Hancock-Blackburn of Moore, Oklahoma. This award recognizes an individual with Down syndrome whose achievements, service, and contributions have enhanced the value and the dignity of people with Down syndrome and their families. Heather is a fierce advocate for the inclusion of individuals with Down syndrome and is dedicated to advocating for changes to laws that would make it easier for people with Down syndrome to get married to people they love and so they can live their dreams together. Heather met her husband, Craig Blackburn, at an NDSC Convention. Learn more about Heather on the NDSC website.

The Education Award is awarded to Stacy Taylor, Ed.D. of Oviedo, Florida. Stacy serves as the President and Clinical Director of Advance Behavior & Learning. This award recognizes outstanding performance on behalf of students with Down syndrome based on demonstrated leadership and innovation in creating or advancing best educational practices for students with Down syndrome. The individual who nominated Stacy shared that, “Dr. Taylor has been a dedicated and exceptional educator and behavior analyst for decades. Her willingness and passion around positive behavior supports and techniques to assist individuals with Down syndrome to speak, learn and engage in their community inclusively is second to none. Frustrated with the lack of understanding by schools on how to engage in best-practice inclusive education, especially for students with Down syndrome, Stacy founded her own school called Advance Learning Academy which serves student from preschool through high school.” She is a frequent speaker at NDSC-sponsored education conferences.

The Employer of the Year Award is awarded to The University of Kansas Health System’s Hospitality Services Team located in Kansas City, Kansas. This award recognizes an employer for efforts in creating employment opportunities and accessible, welcoming, and inclusive work environments for people with Down syndrome. Jeff Novorr, Vice President for Hospitality Services at the The University of Kansas Health System will be accepting the award. The individual who nominated KU’s Health System’s Hospitality Services Team shared that, “I work as a patient greeter in patient transport at the main hospital. I love my job, and I love being part of the team. There are other people with Down syndrome who work at the hospital. Jeff Novorr has been the leader on employing more people with disabilities. I am so proud to have a job at KU.”

Two Exceptional Meritorious Service Awards are awarded to Heather Bradley of Stillwater, Minnesota and Ricki Sabia, J.D. of Olney, Maryland. This award recognizes an individual whose service and contributions to people with Down syndrome and their families have had local, state, and national significance.

  • Heather Bradley is the co-founder and Past President of Down Syndrome Diagnosis Network (DSDN), a national nonprofit that supports new families and works to ensure parents have an unbiased diagnosis experience are are provided up-to-date resources. Heather’s vision for DSDN came from hearing other families diagnosis experiences in a Facebook group that Jen Jacob (DSDN’s Co-Founder) started in 2013. With a background in business and finance, Heather and the DSDN team worked tirelessly to grow DSDN from a network of 100 to a network of over 22,000 families and propelled DSDN to being a preferred resource listed for new families by the American Academy of Pediatrics.
  • Ricki Sabia’s work over the past two decades has focused on increasing state accountability for academic performance and improving educational opportunities, inclusion, and post-school outcomes for students with disabilities, especially those with Down syndrome. Ricki has had an extraordinarily positive impact nationally. Ricki is widely recognized as the top expert on education policy impacting students with intellectual disability. Learn more about Ricki on the NDSC website.

The National Media Award is awarded to Amy Silverman of Phoenix, Arizona. This award honors outstanding national media efforts, which create a better understanding of Down syndrome and people with Down syndrome. The award recognizes programs on television, documentaries, feature films, national publications, serials, syndicated columns, and social media. Amy Silverman is a journalist, writer and teacher whose focus is improving coverage of people with disabilities. She often mixes investigative reporting with memoir, as she writes (with permission) about her daughter, Sophie, who has Down syndrome. Amy’s work has appeared in Slate, STAT, ProPublica and the Center for Public Integrity, as well as on the radio show This American Life. Amy is a member of the advisory board of the National Center on Disability and Journalism and the creator of the storytelling program WORDSLAW, designed to center the stories of people with intellectual and developmental disabilities. Learn more about Amy at

The National Social Media Award is awarded to Extra Lucky Moms, which is run by Taryn Lagonigro and Jess Quarello of New Jersey. This award honors outstanding use of social media to connect the Down syndrome community and/or create a better understanding of Down syndrome and people with Down syndrome. Taryn Lagonigro and Jess Quarello are the co-founders of Extra Lucky Moms and are dedicated to inspiring all people to embrace inclusion in every aspect of the word, espeically disability. They are dedicated to spreading the joy and inspiring everyone to see life through an Extra Lucky lens.

The Pueschel/Tjossem Research Award is awarded to Jonathan Santoro, M.D. of Los Angeles, California. This award recognizes research that has contributed to greater knowledge and understanding of Down syndrome and has improved the lives of people with Down syndrome or their families. Dr. Santoro serves as the Director of Neuroimmunology and Director of Research for the Neurologic Institute at Children’s Hospital Los Angeles. He is also an Associate Professor of Neurology and Pediatrics at the Keck School of Medicine at USC. Dr. Santoro is one of only a handful of national clinician-scientists who treats neurologic disorders associated with Down syndrome. His translational research focuses on cerebrovascular disease and neuroinflammatory disorders such as Down Syndrome Regression Disorder (DSRD).

The Self-Advocate International Impact Award is awarded to Korok Biswas of Kolkata, West Bengal, India. This award recognizes an individual with Down syndrome, outside of the United States, whose accomplishments, service, and contributions have made a significant global impact, elevating the value, dignity, and recognition of individuals with Down syndrome and their families. Korok is an internationally recognized dancer who hopes to inspire future generations of people with down syndrome to follow their dreams. You can view some of Korok’s dances on his Youtube channel.

The Sig Pueschel Service Award is awarded to Dave Donahue of Lombard, Illinois and his family members Adam Donahue, Mary Ferkel, Angelica Camacho, and Jessie Camacho. This award recognizes an individual or organization for outstanding contributions to the NDSC. Dave and his family are being recognized for their many years of service as members of the Youth and Adult Support Team, leading and implementing the Youth and Adult Conference, the “heart and soul” of the NDSC convention. The individual who nominated Dave and his family shared that, “Dave and his family are an integral part and the Y and A Conference and it would not be possible without them and their leadership and participation. They contribute their time not only in the planning for this important event, but they also pay for their own expenses to attend the convention. Their participation is synonymous with the Youth and Adult Conference and their contributions make a significant impact on our community.”

The NDSC would like to formally thank all of the award winners and those who took the time to submit nominations for the 2024 award cycle.

Job Opening ~ Executive Director


Overall responsibility:

The Executive Director is responsible for providing strategic leadership for the NDSC by working with the NDSC Board, its Executive Committee, and members of the NDSC Foundation to establish long-range goals, strategies, plans, and policies. The Executive Director is also responsible for overseeing the day-to-day operations of the organization, managing staff, and ensuring the organization’s financial sustainability.

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National Down Syndrome Congress The Scoop: The Big Six for Employing People with Disabilities

By Jeff Novorr, Vice President of Hospitality Services, University of Kansas Health System

Here’s the scoop… Walt Disney once famously said, “It all started with a Mouse.” For me, it all started with a scoop (of ice cream). You read that right – my exposure to disability employment began with a scoop – a Golden Scoop to be exact.  In 2021, after reading an article in the local media, I visited The Golden Scoop, a then-new, not-for-profit ice cream shop in Overland Park, Kansas. You see, they mostly employ people with disabilities, and according to the article I read, they were no longer accepting applications for employment because they had a waiting list for open positions. At the same time, amid the pandemic, my departments at The University of Kansas Health System were struggling with more than 100 open positions we could not fill. What was I missing? Turns out a lot. Click the video to hear the rest of my story.

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NDSC E-News ~ October 2023

NDSC Welcomes New Interim Executive Director and Board Officers
and Thanks Dedicated Outgoing Officers

NDSC is pleased to announce our Interim Executive Director and new Board Officers. Together they bring a wealth of knowledge, experience, passion, and momentum to NDSC!

Please welcome:
Interim Executive Director – Stephanie Smith Lee
President – Sean J. Smith
Vice President #1 – Tony Zanfordino
Vice President #2 – Beau Brooks
Vice President #3 – Dana Halle
Vice President #4 – Jill Reffett
Secretary – David Chaplin
Immediate Past President – Marilyn Tolbert

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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 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 –

Vice President #1 –  Tony Zanfordino –

Vice President #2 –  Beau Brooks –

Vice President #3 –  Dana Halle –

Vice President #4 –  Jill Reffett –

Secretary – David Chaplin –

Treasurer – Garrick Batley –


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 ) which is one of over 300 college/university education programs for individuals with intellectual disability.


NDSC E-News ~ August 2023

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