NDSC E-News ~ March 2020

Mission Moment
With NDSC Executive Director, David Tolleson

You matter, but do you count?

That’s a question with a simple answer in the months ahead. If you vote in your state’s primary or caucus and November’s general election; and, if you respond to the decennial census, then you definitely count…and that matters! Historically, the needs of individuals with Down syndrome haven’t been considered by society or the government. Hubert Humphrey famously said that individuals with disabilities were people living in the shadows of society – perhaps not purposefully ostracized, but overlooked and, often, forgotten.

For nearly five decades, the NDSC has successfully advocated for laws and policies that help ensure men, women, and children with Down syndrome are included in schools, workplaces, and communities. However, our work is far from over and previous gains can be (and sometimes are) rolled back.  To help us succeed, your family needs to be counted, both in the census and on election day.  If your household isn’t correctly identified in the census, it could impact funding for services your family member with Down syndrome needs or may need in the future.  And, if you don’t know where the candidates stand on topics like full funding for I.D.E.A., competitive integrated employment, or a host of other issues important to our community, you could inadvertently vote for someone who doesn’t support what’s most important to you and your family.  At the NDSC, we’re proud of our reputation for working with officials from both sides of the political aisle – true progress in disability rights occurs with bipartisan support.  Because of that, we’ll never tell you who to vote for, but we will always encourage you to talk to the candidates, investigate their positions on the issues important to you and to the disability community, and to make your voice heard at the ballot box.

So, we know you matter.  Please make sure that you also count!





Registration Opens_Banner_Masks

The NDSC Convention is a 4-day event designed to educate parents, family members, and caregivers, as well as medical and educational professionals. With the General Conference; Brothers & Sisters Conference; and the heart and soul of the weekend, Youth & Adults Conference as well as the Educators Conference there is something for everyone.

Make your plans to join us this June 25th – 28th in New Orleans, LA.

Still Not Sure What the NDSC Convention is About or Why You Should Attend?

Pre-recorded Convention 101For most, the opening of the NDSC Convention registration means finding out what new opportunities await to hear the latest information from world-renowned experts on topics important to those with Down syndrome and the chance to experience the one-of-a-kind NDSC “giant family reunion” feeling that permeates the convention weekend. It may also mean many unanswered questions.  What conference do I attend?  What is included with my registration?  Is there child care? What topics will be covered in the workshops? What do I wear to the 321 Boogie & Beads Dance?

Listen as NDSC staff members tell you all about this year’s 4-day event, which will be held in New Orleans, June 25-28, 2020 and you will be ready when registration opens on April 6th, at 9:00 AM EDT.

Kick-Off Convention at Advocacy Boot Camp

2020 Advocacy Boot CampThe 48th Annual NDSC Convention weekend kicks off Thursday, June 25th, with Advocacy Boot Camp.  This intensive session will be led by NDSC Advocacy experts; staff, self-advocates, and community advocates who will give an overview of basic government processes of state and federal appropriations, define advocacy, and share their tips and experiences.

Advocacy Boot Camp is designed to be an Advocacy 101 mini-course with a focus on legislative advocacy, but even the most experienced advocate will come away with something new and re-energized after joining the open discussion on how to effectively engage with legislators.

Advocacy Boot Camp is FREE to all registered guests but an additional RSVP is required after registering for the NDSC Convention.

2nd Annual NDSC College Fair

2020 College Fair _Circle OnlyNDSC will hold our second College Fair on June 26, at the 48th Annual NDSC Convention in New Orleans. This event is a collaboration with Think College and will be a great opportunity for self-advocates and families to meet college representatives to learn more about postsecondary programs for students with intellectual disability.

Come as you are!  The College Fair is open to all NDSC Convention attendees and does not require an additional RSVP.

Colleges and universities interested in an opportunity to showcase post-secondary programs for students with intellectual disabilities can find more information or register on our website or they may email NDSC Programs Coordinator, Alexis Glaubitz, at Alexis@NDSCcenter.org

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The 3rd Annual NDSC All Kinds of Heroes Golf Classic is Just Around the Corner!

The 2020 NDSC All Kinds of Heroes Golf Classic will be held on Monday, March 16th, at the fabulous Bear’s Best Golf Course in Suwanee, GA.  Proceeds from the tournament will support outreach and education programs for people with Down syndrome, their families and the professionals who serve them, as well as provide free printed materials and resources for communities.

The 2020 event will include golf, breakfast, lunch, dinner/awards dinner, a bottomless Yeti for unlimited beverages, contests, including a chance to win $50,000 in cash, and other great prizes on 4 hole-in-one opportunities!

Everyone Can Join in on the Fun!

Fireball DropEach year the highlight of the NDSC Golf Classic has been the FIREBALL DROP!  Purchase your Fireballs today, then watch us live stream on Facebook as we hoist the Fireballs to the top of the aerial ladder of a fire truck, then drop them to the green below.  The ball that lands in the hole first, or closest to the hole will win a CASH PRIZE.  The more Fireballs sold – the bigger the prize!


Register to play or purchase your Fireballs today!


Nominations Are Now Being Accepted for the NDSC Board of Directors

BOD Nominations

The National Down Syndrome Congress Board of Directors is composed of twenty-one parents, family members of individuals with Down syndrome, self-advocates, and professionals who work with the Down syndrome community. The Board of Directors is responsible for carrying out and shaping NDSC policy as well as overseeing the fiduciary responsibility of the organization.

We are currently seeking individuals to fill seats that will be open this June.  If you would like more information or would like to complete the Board of Directors nomination form please visit our website.


The Board Director elections will be held at the NDSC’s General Membership Meeting at 4:00 PM, Friday, June 26, 2020, during the 48th Annual NDSC Convention in New Orleans, LA, to be held at the Hyatt Regency Hotel New Orleans, 601 Loyola Avenue New Orleans, LA 70113

NDSC Members are invited to attend the Annual General Membership Meeting to vote for their new leaders, hear reports from the NDSC Treasurer, NDSC Foundation Trustees, and, an overview of activities by our Executive Director as well as other business that will be conducted as warranted.

Nominations Deadlines

  • NDSC General Membership nominations will be accepted through April 15, 2020.
  • Self-Advocate Directors nominations must be submitted before May 1, 2020.

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Join the NDSC Policy & Advocacy team in Washington, D.C. March 23rd – 25th at the Disability Policy Seminar.  We are a proud partner of this amazing event that offers the opportunity for passionate advocates, self-advocates, experts, and professionals in the field to come together and learn about key issues that affect them most. The event will consist of two days of training and learning, and on day three, attendees will head to Capitol Hill for a day of meetings with their Members of Congress

At this year’s event, the three headlining learning sessions will focus on:

  • Community living and access to services that make community living possible, as well as waitlists and the legislation and funding behind them
  • The 30th anniversary of the Americans with Disabilities Act (ADA) and the work that still needs to be done to ensure its protections are fully available
  • Getting ready to exercise the right to vote in the upcoming election!

NEW THIS YEAR – Breakfast on the Hill before your Capitol Hill visits.  Included in every registration, fuel up and get ready for a big day; what great way to kick off your Hill visits!


Why it Counts to be Counted in the 2020 Census
Parent Webinar

3.18.2020 Census WebinarThe census is a count that happens every 10 years of every person who lives in the United States and its territories. Soon, you will be asked to count everyone who lives in your home as of April 1. Responding to the 2020 Census is a chance to shape your future and the future of your community.  The population count affects your representation in government, determines how much funding your community receives, and provides data to help plan for the future.

Join us for an important parent webinar and find out Why it Counts to be Counted! We will hear from a census representative who will share the importance of the 2020 Census and how an accurate count affects the disabilities community in areas such as employment, housing, funding for disabilities basic support, and advocacy grants.

NDSC Celebrates WDSD 2020 With Kendra Scott

Kendra Scott Invite WDSDJoin us while shopping Kendra Scott’s latest jewelry collection and 20% of all sales during the event will go to NDSC.

Those in the Atlanta area are invited to join us for some sips and sweets at the Kendra Scott location in the Avalon in Alpharetta from 2 PM – 4 PM on March 21st. Your RSVP is appreciated if you are planning to attend.

Not near Atlanta? No problem!  Visit www.KendraScott.com to view the full catalog then place your order at (678) 392-3886 between 2 PM- 4 PM on March 21st. Your items will ship for free.


About Kendra Scott
Kendra Scott has created collections of timeless pieces that have won over loyal fans, media and celebrities alike. Since she began her company, Kendra has lived by three core values: Family, Fashion and Philanthropy. She created a brand and culture that authentically values giving back and making a positive difference in the community. The Kendra Scott Company maintains a focus on its customers and the causes close to their hearts, abiding by the mantra “What Matters to You, Matters to Us.”






Research Opportunities

“Social Determinants of Health-Related Quality of Life and Family Adaptation”

The University of North Carolina at Chapel Hill is looking for parents (must be 18 years of age or older) of children (under the age of 19 years) who have Congenital Heart Disease, Down syndrome, or both Congenital Heart Disease and Down syndrome to take part in a study to examine how social determinants of health (e.g. economic stability, education, health and health care, and where you live) influence child and caregiver health-related quality of life and family adaptation in three groups of families:

(1)  families of children with Congenital Heart Disease

(2)  families of children with Down syndrome

(3)  families of children with Congenital Heart Disease and Down syndrome.

Participation involves completing a 30-40 minute survey.

To learning more about the study, you may email Dr. Marcia Van Riper, Professor at the University of North Carolina at Chapel Hill, at vanriper@email.unc.edu.  You can find more information and begin the survey by visiting https://www.surveymonkey.com/r/SKTDQW3


 “Determinantes Sociales de la Salud, Calidad de Vida Relacionada con la Salud y Adaptación Familiar”

Si usted es el padre o la madre (con 18 años de edad o mayor) de un/a niño/a (menor a 19 años) que tiene Cardiopatía Congénita, síndrome de Down o ambos Cardiopatía Congénita y síndrome de Down, le invitamos a participar en un proyecto de investigación que estamos realizando. El objetivo de este estudio es examinar cómo los determinantes sociales de la salud (estabilidad económica, educación, salud y cuidado de la salud y donde usted vive) influyen en la calidad de vida relacionada con la salud y la adaptación familiar del niño/a y de los padres en tres grupos de familias:

(1)  familias de hijos con Cardiopatías Congénitas,

(2) familias de hijos con Síndrome de Down y

(3) familias de hijos con Cardiopatías Congénitas y Síndrome de Down.

La participación implica completar una encuesta con una duración aproximada de 30 a 40 minutos. Si usted está interesado/a en saber más de este estudio, puede enviar un correo electrónico a la Dra. Marcia Van Riper (vanriper@email.unc.edu), quien es una Profesora en la Universidad de Carolina del Norte en Chapel Hill. O puede hacer clic en el siguiente enlace que incluye detalles adicionales sobre el estudio, así como la encuesta real: https://es.surveymonkey.com/r/R8XFJX6