Welcome!

All of us at NDSS are thrilled to bring you the NDSS National Policy Center blog.

While you can read about specific initiatives and pieces of legislation on our website and stay tuned via our action alerts, the blog is a great opportunity to share a bit of the “behind the scenes” of our work. It is a way to let you know when we have a great meeting with a White House official, get inspired by a self-advocate or react to something we see in the media that relates to a policy center activity.

The NDSS National Policy Center is lucky to benefit from the expertise of countless affiliate leaders, self-advocates, family members, board members, elected officials and professionals. We aim to share these connections via the blog as well, by inviting special “guest bloggers” on relevant topics.

We are especially excited about this blog because so often, adding a cosponsor to a bill or participating in a briefing is just the headline of an interesting and compelling story.

There was one example of this, just weeks ago, on May 12 when I testified before the US House of Representatives Subcommittee on Labor, Health and Human Services, Education and Related Agencies. The purpose of the testimony was to advocate for $5 million dollars in funds to go to the Center on Birth Defects at the Center for disease Control and Prevention (CDC) to implement the new prenatal legislation which passed in 2008. Click here to learn more about The Prenatally and Postnatally Diagnosed Conditions Awareness Act.

The hearing took place in a small, darkly paneled room with Chairman Obey on a dais above those giving testimony and many Subcommittee staff behind him. More than a dozen witnesses testified briefly about a range of issues from research to unlock the causes of cancer, Rhett syndrome and funding for specific disability programs like the Center on Birth Defects and Developmental Disabilities.

When I finished my testimony, Chairman Obey remarked that he especially understood the issues relating to the Act because he had a nephew with Down syndrome!

It is these moments, ones that would never make it into an action alert, but mean so much to our work and our cause, that we aim to continue to bring you on this blog. Stay tuned!

Regards, Madeleine Will, Director NDSS National Policy Center, Vice President of Public Policy