By Deanna Tharpe, DSAIA Executive Director
World Down Syndrome Day was established by Down Syndrome International in 2006 and is observed in more than 60 countries worldwide. It is held on 21 March (3/21) to signify the trisomy of chromosome 21 unique to Down syndrome. 3-21 aims to raise awareness and understanding about Down syndrome by promoting the inherent rights of persons with Down syndrome to enjoy full and dignified lives and be active and valuable participants in their communities and society.
March 21, 2012 demonstrates important international progress by the support of the United Nations for people with Down syndrome. For the first time ever in 2012 the UN will officially observe World Down Syndrome Day and all 192 UN countries will recognize 3-21 in a joint partnership to raise awareness, acceptance, and inclusion for individuals with Down syndrome.
Down Syndrome Affiliates in Action couldn’t be more proud of our board member, David Egan, as he will be speaking at the UN tomorrow. He is in good company. Also speaking will be Jason Kingsley, co-author of the book Count Us In: Growing Up With Down Syndrome; Emily Perl Kingsley, mother, writer, activist, author of “Welcome to Holland”; Michelle Sie Whitten, Executive Director of Global Down Syndrome Foundation; Dr. Jose Florez, NDSC Board Member and NDSS Clinical Advisory Board Member; Dr. Brian Chicoine, Medical Director at Adult Down Syndrome Center; Dr. Dennis McGuire, Director of Psychosocial Services at Adult Down Syndrome Center; Krista Flint of Inclusive Humanity; Dr. Edward McCabe, Executive Director of Linda Crnic Institute for Down Syndrome; and Margie Doyle, Development Coordinator of Down Syndrome Research and Treatment Foundation.
If you’ve never heard David speak, it’s quite a treat. I was able to step in and listen to a portion of his presentation at the 2012 DSAIA Conference. He’s a natural – with total command of the room. He’s passionate about advocating for self-advocates and it comes through. In the last six months, David has been working with other DSAIA board members and self-advocates to create the Advocates Leaders in Action ALLIANCE. This committee’s goal is to promote leadership positions for self-advocates, to support organizations and board members in discovering the value of having adults with Down syndrome serving on the board and/or in leadership positions, and to gather lessons learned and best practices in a successful inclusion process.
And, tomorrow, David Egan will speak at the United Nations along with other professionals and self-advocates from around the globe to show the rest of the world what is not just a possibility but a reality…right now. Wow. Way to go, David.