The leading human rights organization for all individuals with Down syndrome.

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NDSS and DSANV Mourn the loss of Steve Beck

Washington, DC (December 8, 2014)- It is with profound sadness that the National Down Syndrome Society (NDSS) and the Down Syndrome Association of Northern Virginia (DSANV) announce the loss of longtime Down syndrome community leader Steve Beck, Jr., the Vice Chairman of both the NDSS and DSANV Board of Directors. Beck, passed away at his home in Northern Virginia this morning.

Beck served on the NDSS Board of Directors for over five years and previously was the chair of the National Government Affairs Committee. This May, Beck was selected as the Vice Chairman of the NDSS Board. In addition to his work at NDSS, Beck also served locally on the Board of Directors for the Down Syndrome Association of Northern Virginia (DSANV) for over eight years, the past six as Vice Chairman. 

“Steve was a tremendous person, a loving father and a great advocate for people with Down syndrome,” said NDSS Chairman Rob Taishoff. “His leadership was one of his greatest assets and he will be missed.”

It was eight years ago that Beck came up with a plan to help his daughter, Natalie, who happens to have Down syndrome, save for the future. That plan, which is now known as the Achieving a Better Life Experience (ABLE) Act, has made it through the House of Representatives last week and a vote is looming this week in the Senate, the ABLE Act, when it becomes law, will forever be marked with Steve Beck's legacy. 

“Without Steve seeing firsthand the inequity in the system for people with Down syndrome, we may not be on the verge of passing this landmark bill and helping millions of Americans,” said Sara Hart Weir, NDSS Interim President.  “To see the joy on his face last week when the bill passed through the House, is something I will cherish forever. Today, we lost a dear friend, dedicated colleague, and wonderful community leader."

Brian Ray, DSANV President, "Steve's ability to work on the national level while also being extremely active in the local community exemplified his passion and commitment to the entire Down syndrome community. He will be missed immensely."   

Beck is survived by his wife, Catherine, and his two daughters, Mariae Rose and Natalie. The thoughts and prayers of NDSS and DSANV are with the Beck family at this time.

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