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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.”

The Exceptional Meritorious Service Award is awarded to 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. Her 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 and she 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 amy-silverman.com

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

JOB DESCRIPTION
(Full-time)

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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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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NDSC ANNOUNCES INTERIM ED AND NEW BOARD OFFICERS

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.

 

NDSC Statement on Discriminatory Medical Treatment Rationing During COVID-19 Crisis

The National Down Syndrome Congress (NDSC), the country’s oldest national organization serving people with Down syndrome, their families, and the professionals who work with them. NDSC advocates for all people with Down syndrome to be treated equally and works to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome. We realize that during this COVID-19 public health crisis that the need for intensive medical care may exceed the capacity and resources of our healthcare system. We also recognize that medical providers may be forced to make decisions regarding who should receive care and how much care an individual will receive.

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NDSC is Committed to You During COVID-19

For 48 years, the mission of the National Down Syndrome Congress has been to provide information, advocacy, and support concerning all aspects of life for individuals with Down syndrome.  We’ve weathered many storms together in the past near half-century, and we will get through our current national crisis together too.  NDSC remains committed to being a leading resource of support and information to our members during this time of uncertainty and will continue to be here for you as we learn more about the coronavirus (COVID-19) and how it will affect all of us. 

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Mi Hijo Con Síndrome de Down Quiere Ser Independiente

Via: The Mighty – Alicia Llanas

Chico con síndrome de Down en Cancún

Elías está creciendo.

Esto no debería ser una sorpresa, todos los seres vivos crecemos, pero cuando hablas de que es un niño que tiene síndrome de Down, de pronto se vuelve “sorpresa.”

Ajá, porque aparentemente las personas con síndrome de Down son niños eternamente, digo no lo son ni en estatura, ni en físico, pero en mente sí, no? Pues ese es un mito de los que queremos borrar.

Vaya que nos está pegando la “juventud” por aquí.

Jamás creí que ser mamá de un pre-adolescente sería tan difícil.

Y ha sido muy notorio, porque ahora discutimos, y discutimos mucho, desde que iniciamos con medicamento, hemos visto un incremento considerable en su comunicación, aun sigue en un nivel bajo, pero ahora expresa muchísimo más de lo que piensa, siente, te hace cuestionamientos de esos que terminas diciendo, “Porque sí, soy tu mamá y ya.” Pero sobretodo empezó a reclamar más su independencia y no me refiero a actividades en el hogar, eso ya lo hace desde hace mucho, me refiero a que quiere salir sólo.

Despertamos una mañana y no estaba.

En mayo pasado fuimos a Cancún, alejado de toda civilización, super tranquilo, todos muy amables, el hotel grandísimo, así que desde el día uno, como todo parecía un laberinto, le enseñé a Elías a que prestara atención el camino para llegar al cuarto, por cual entrada, por cual elevador, el pasillo, el piso, hacia donde caminar saliendo del elevador, etc.

Los niños dormían en una habitación, nosotros en otra, sinceramente no pensé ni siquiera en Eva que se fuera a salir, un día despertamos y Elías no estaba, bueno, más bien mi esposo despertó y yo desperté cuando me dijo “Elías no está!” Ya se imaginarán, ¿cómo? ¿cuándo? el estrés a todo lo que da, mi esposo sale del cuarto y yo me quede esperando por si acaso.

De rato llegan, Elías “regañado” y me dice mi esposo que lo encontró en el Lobby; un empleado lo llevo ahí.

Hablando con Elías nos dice que él sólo quería ir a ver a la gente en la fiesta, porque una noche antes había sido la boda, entonces, no sé, tal vez pensó que el baile seguía, realmente no nos apuraba que se hubiera metido al mar o a la alberca, el es demasiado precavido para eso, pero si el hecho de que se hubiera perdido entre tanto pasillo, elevador, etc. Pero no, él sabía el camino exacto.

Más tarde diferentes personas que habían ido a la boda nos dijeron que lo habían visto caminando sólo, y como lo conocen, y como nos conocen, y lo vieron tan seguro, que no pensaron que se hubiera escapado.

Y desde ese día todo cambió.

En diferentes ocasiones nos dimos cuenta que se quiso salir de la casa.

Nosotros: Elías! es que no te puedes salir así como así.

Elías: Porqué no?

Nosotros: Porque tienes que pedir permiso, y si alguien te roba, y si creemos que algún villano te hizo algo malo?

Elías: Pero no pasa nada, estoy bien! Soy joven!

Puffff…. así de pronto, dejó de ser nuestro niño, a ser un joven.

Le insistimos muchísimo que tenía que pedir permiso, así que obvio empezó a decirnos cada rato en que quería ir a la tienda sólo.

Estábamos en un proceso.

Íbamos a la tienda, lo esperábamos afuera mientras el compraba, el era feliz, pero ya no era suficiente, quería más.

Y pues el estaba pidiendo permiso, así que se lo dí.

Cuando vi que dio la vuelta lo seguí, cruce la calle y desde enfrente, escondida lo vi, emocionada, nerviosa, quería gritar, seguramente me veía sospechosa, pero no me importó.

Elías fue y regresó sin problema.

Estoy aprendiendo a soltarlo.

Quisiera que el doctor que me dijo que tendría un ángel conmigo para toda la vida lo viera.

Confieso que no es fácil, estoy aprendiendo a confiar en él, en sus habilidades, en todo el trabajo que hemos realizado durante todos estos años, en la gente que vive a nuestro alrededor, pero sobretodo aprendiendo a confiar en la promesa de Dios de que haría lo inimaginable en la vida de Elías.

Hace unas semanas, antes de salir a Panamá lo envié a la tienda, sin ir detrás de él, me conecté al Facebook live, y pude compartir los nervios con otros tantos que me acompañaron.

Hoy recién acaba de llegar, lo mande por unas galletas y me dice, “Lo siento no había, te traje cacahuates.”

Ahora cada vez lo hace más rápido, más seguro, y sobre todo, supongo, se siente feliz de que le estemos dando la oportunidad de ir a la tienda sólo. Y yo cada vez me siento más tranquila también.

Estamos creciendo juntos.