NDSC Special WDSD Edition E-News

Mission Moment

With NDSC Executive Director, David Tolleson

 This World Down Syndrome Day dawns on a changed planet. Who would’ve guessed – even just a few weeks ago – that we would find ourselves where we are today? Like you, the NDSC is adapting to this rapidly evolving situation. Our staff is adjusting to working remotely and we’re exploring new ways to support the Down syndrome community. We are committed to providing you with up-to-date, accurate – but also practical – information and resources needed to navigate our new normal. As part of that, we are increasing the number of free webinars we offer, focusing on topics that are most useful during this self-quarantine period. We are working with our national partners on developing researched, factual information about COVID-19 that you and your family can use. And, of course, our Policy Team is working with Administration and Congressional officials and staff on providing supports – and preventing harm – to our families during the coronavirus response.

In order to ensure your family’s health and safety, we have postponed several spring events until the fall.

However, in spite of the current feelings of uncertainty and unease, it’s important to remember that today is still a day of celebration. We give thanks for the men, women, and children with Down syndrome, the families, and the professionals that we know, admire and love.  We celebrate our greater national and international Down syndrome community. And we rejoice in you, for the light and strength you bring to our world.

So for today, we hope that you will turn off the television, tune out the noise, and take time to celebrate all that we have because we’re lucky enough to love someone with Down syndrome. Yes, we are on a difficult journey, but you can count on us to walk with you every step of the way.

With warm wishes,

Celebrate World Down Syndrome Day with NDSC

Get Social With Us on World Down Syndrome Day

Get social with us – Tell the world what World Down Syndrome Day means to you.  We invite you to share your pictures, videos, drawings, maybe even a poem about and include the #WhatWDSDMeanstoMe on the NDSC Facebook page.

Kendra Scott Gives Back on World Down Syndrome Day

2020 WDSD w Kendra ScottAre you looking for a special gift for an upcoming graduate whose senior year isn’t turning out as they planned? How about a gift for mom for Mother’s Day because along with all of her superpowers she has now become a full-time educator, entertainment planner, exercise instructor, and therapist? Maybe you just need a little retail therapy for yourself?

Join NDSC today at Kendrascott.com and when you use the code GIVEBACK5257 Kendra Scott Gives Back 20% of your purchase to the National Down Syndrome Congress!

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.”

Shop Now

Practical Resources for Your Family

Preparing for Online Learning Webinar Series

Parent Webinar Series

This 3 part series webinar series, hosted by NDSC Board member and University of Kansas Professor of Special Education Sean J. Smith, addresses the important issues students, parents, and educators are facing during the quarantining caused by the COVID-19 pandemic.

The first session, entitled “Preparing Yourself, Your Family, and Your Home for Online Learning”, focuses on preparing the home environment for learning and working, while ensuring balance for all. The second session, entitled “The ABCs of K-12 Online Learning for Students With Disabilities”, is scheduled for March 24th at 3:00 PM.  In this session, Dr. Smith will include tips and strategies to plan for effective teaching and will focus on what parents and educators can do to further facilitate online learning. We will announce the date of the third session, “Tips, Tools, and Techniques to Maximize Online Learning for Students With Disabilities” soon.

Click below to listen to session #1 or to register for future sessions.



Introducing the New NDSC COVID-19 Resource Library
NDSC Resource Library

Misinformation about COVID-19 is reaching “infodemic” levels, perhaps even more so for people wanting to know how it may affect individuals with Down syndrome.  The NDSC has gathered and vetted many sources and resources to help our families and the professionals who serve them, as we all work to flatten the curve.

The new NDSC COVID-19 Resource Library found on our website under the Programs & Resources tab, is full of practical resources and information for your family.  This library contains resources from trusted sources such as the Center for Disease Control and Prevention (CDC) and the World Health Organization, as well as from the Center for Public Representation (CPR) about how to stay safe during these unprecedented and uncertain times.

We know that everyone’s routine has been turned upside-down and you might need help finding materials or advice.  Whether you are a parent who is now wearing the hat of a teacher, an aspiring advocate who wants to help make a change or perhaps looking for fun free or low-cost & entertaining activities for the whole family, you’ve come to the right place! You will find tools and information to help your family adjust to online learning, therapy at home, and the ideas for fun, family activities to keep everyone busy and healthy during this time of social distancing, with many resources included in Spanish.

Knowledge about the virus is developing and changing continuously and we strive to keep bringing you accurate and up-to-date information, so check back often.


Make a Difference – Get Involved

Identify Needs and Develop Solutions

NDI Listening Sessions

We invite you to join NDSC, National Disability Institute (NDI), and partnering organizations for 2 Listening Sessions to learn from individuals with disabilities, family members, disability service providers and public agency leaders about the current impact of the Coronavirus pandemic. We will hear from staff from the Office of U.S. Senator Bob Casey, who is working on legislation to respond to the needs of individuals with disabilities and others with chronic health conditions who are the most vulnerable populations susceptible to the Coronavirus.

Please help us identify the needs, develop solutions and document for Congress and federal officials the challenges of:

1. Access to testing and health services

2. Access to prescription drugs and services part of the usual routine

3. Loss of income from furloughs or termination of employment

4. Social isolation and mental health

5. Access to online communication

6. The new normal of virtual life

7. Limited access to needed personal assistance

8. Adverse impact on disability service provider agencies

9. Other aspects of change and their adverse consequences

Partnering Organizations:  American Association of People with Disabilities (AAPD), American Network of Community Options and Resources (ANCOR). Association of People Supporting Employment First (APSE), Autism Society of America, Bazelon Center for Mental Health Law, Collaboration to Promote Self-Determination (CPSD), National Association of Councils on Developmental Disabilities (NACDD), National Council on Independent Living (NCIL), National Disability Rights Network (NDRN). National Down Syndrome Congress, United Spinal Association, World Institute on Disability (WID)

For more information about the events visit the NDI Facebook Event page

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.

If you would like more information or would like to complete the Board of Directors nomination form please visit our website.


Nominations Deadlines

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