World Down Syndrome Day – United Nations, NYC

A self-advocate celebrates at the United Nations' official commemoration of World Down Syndrome Day in New York City and all 191 UN member countries.

On March 21, 2012, the Global Down Syndrome Foundation and the Linda Crnic Institute for Down Syndrome spoke at the first United Nations’ Down Syndrome Conference. The conference commemorated the UN’s resolution to recognize March 21st as the official “World Down Syndrome Day” in 191 countries. World-renowned speakers from several countries including Brazil, the United Kingdom, Indonesia and Peru were invited to speak.

Global Down Syndrome Foundation Executive Director Michelle Sie Whitten kicked-off the impressive panel of speakers with a presentation titled “The Power of Media – A Guide to Working with the Media to Promote Inclusion.” Key staff from the Linda Crnic Institute also presented on the latest and best practices surrounding medical care and research for individuals with Down syndrome. You can watch video from the entire conference by clicking here.

The UN’s New York offices were inundated by self-advocates from around the world who were eager to attend this first-of-its-kind event. Prior to the event, UN Secretary General Ban Ki-Moon issued a special statement commemorating the occasion and reaffirming that people with Down syndrome deserve fundamental human and civil rights.

“On this day, let us reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms.  Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all.”

– Ban Ki-Moon, Secretary General, United Nations

The Global Down Syndrome Foundation applauds the United Nations for helping to raise awareness about Down syndrome in all its 191 member countries, and looks forward to participating in the World Down Syndrome Day on March 21, 2013.


Self-advocates from around the world gathered at the United Nations in New York City on March 21, 2012.

10:00 – 10:30am   Opening Remarks and Launch of World Down Syndrome Day

Penny Robertson OAM – Chair of Board of Trustees, Down Syndrome International (DSi) –Welcome and Introductions

Dr. Asha-Rose Migiro, – United Nations Deputy Secretary-General – Message on World Down Syndrome Day

Ambassador Maria Luiza Ribeiro Viotti – Permanent Representative of Brazil to the United Nations

Ambassador Witold Sobkow – Permanent Representative of Poland to the United Nations

Diana Stolfo – Self-advocate, National Down Syndrome Society

1)  10:30am – 11:00am   UN Convention on the Rights of Persons with Disabilities (CRPD) and Inclusion – The Importance of Global Coordination Efforts to Promote the Convention

Akiko Ito – Chief, Secretariat for the Convention on the Rights of Persons with Disabilities/DSPD/DESA, United Nations (Moderator)

Rosangela Berman-Bieler – Senior Adviser on Children with Disabilities, UNICEF – The Convention and inclusive education

Penny Robertson – DSi – Promoting inclusion in schools in Indonesia

Shona Robertson – Australia, Self-advocate – My education…my life

Thiago Rodrigues – Brazil, Self-advocate, Carpe Diem Association – Communicating and understanding

2) 11:00am – 11:30am   Human Rights and Political Participation of Self-Advocates 

Emily Perl Kingsley – USA, Author of “Welcome to Holland” – (Moderator)

Jason Kingsley – USA, Self-advocate/Author – Growing up with Down syndrome

Maria Alejandra Villanueva Contreras – Peru, Self-advocate – Fighting for the right to vote

David Egan – USA, Self-advocate – Congressional advocacy: “One of us and not one among us”

Ester Nadal Tarrago – Spain, Self-advocate – Understanding the Convention

3) 11:30am – 12:00pm   Changing Society Attitudes – From Neglect to Protagonist and Living in the Community

Jessamy Tang – USA, Down Syndrome International – (Moderator)

Rose Mordi – Nigeria, President of Down Syndrome Association Nigeria – Social attitudes in Africa

K.S. Sripathi – India, Down Syndrome Association of Tamil Nadu – State of Inclusion in India

Tom Forester – USA, Residential Services, ACDS – Supporting safe independence

Michael Brennan – USA, Self-advocate – Living my life

4) 12:00pm – 12:30pm   The Power of Media – A Guide to Work with the Media to Promote Inclusion 

Michelle Whitten – USA, Global Down Syndrome Foundation – How to get media attention in a positive, constructive way

Patricia Almeida – Brazil, MetaSocial Institute – Occupy the Media – (Moderator)

Tatiana Heiderich – Brazil/Holland, Self-advocate – Her experience as a TV reporter

5) 12:30pm – 1:30pm   Care and Treatment – Improving Quality of Life

Dr. Jose Florez – Mass Gen Hospital, Adult and Adolescent DS Clinic – Caring for adults with Down syndrome: Preparing now for a healthy future

Dr. Brian Chicoine  – Adult DS Center, Lutheran Gen Hospital – Living Longer, Living Healthier

Dr. Dennis McGuire – Psychosocial Services, Adult DS Center, Lutheran Gen Hosp – Promoting Mental Health

6) 1:30pm – 2:00pm   Research – Latest Down Syndrome News

Dr. Edward McCabe – Linda Crnic Institute for Down Syndrome – Exciting new era

Margie Doyle – Down Syndrome Research and Treatment Foundation (DSRTF) – Latest news on research and how to help it move faster