NDSS Interview Part 2

This week I am posting portions of a series of questions I asked Jordana Stern, Communications Associate for NDSS. Yesterday, Ms. Stern addressed the challenges people with Down Syndrome and their families face. One of the most interesting things I took from that was that people with Down Syndrome are living longer, thus affecting family decisions at the economic level, that had not happened before.

Today's questions focuses more on the work NDSS does. For more info on NDSS, please go to www.ndss.org

Again, please consider donating towards my $1,000 goal as I run for my niece Sabrina and NDSS.

2) NDSS has four areas of focus: Education, Development & Community Life, Policy, Research, and Healthcare. Can you talk about some of the successes NDSS has had in those areas? (Please note our four areas of programming below)

Jordana Stern: NDSS is focused on four areas of programming: community support programs, the NDSS National Policy Center, public awareness initiatives and the National Buddy Walk® Program.

NDSS Community Support Programs

NDSS leads a network of over 350 affiliate groups across the country, consisting of local parent support groups and other organizations that provide services to the Down syndrome community. Some key services NDSS offers to its affiliates and to the Down syndrome community as a whole include:

• The Goodwin Family Information and Referral Center

Through its toll-free helpline and email service, NDSS receives more than 10,000 requests a year for information on Down syndrome. The Goodwin Family Information and Referral Center is also supported by a translation service that can be accessed in over 150 languages.

• Publications

NDSS publishes A Promising Future Together: A Guide for New and Expectant Parents and informational brochures in both English and Spanish.

• Website

A comprehensive and up-to-date resource for families, professionals, affiliates and others, www.ndss.org receives over 3 million page views each year and includes an extensive Spanish translation.

NDSS National Policy Center

The NDSS National Policy Center strives to protect the rights and remove barriers for all individuals with Down syndrome. The work of the policy center is guided by its dynamic legislative agenda which includes a wide range of issues and touches every stage of life. These issues include education, health care, research, employment and independent living.

The NDSS National Policy Center:

• Works with Congress and federal agencies to develop and improve legislation

• Trains and educates parents, self-advocates and others to advocate on the local, state and national levels

• Organizes and participates in coalitions of national disability organizations

• Leads national and statewide Governmental Affairs Committees

NDSS Public Awareness Initiatives

The purpose of public awareness at NDSS is turn the mission of “value, acceptance and inclusion” into a positive, comprehensive national public awareness message. NDSS proactively reaches out to national media outlets including television, print, online media, and radio to secure editorial content on issues within the Down syndrome community, as well as to secure positive and inspirational news stories. NDSS monitors all forms of media on a daily basis, 365 days a year.

My Great Story is NDSS’ largest public awareness campaign, and its goal is to ignite a new way of thinking about people with Down syndrome by sharing and telling stories, which are displayed in a beautiful online storybook.

National Buddy Walk® Program

The Buddy Walk® is a national Walk program created by NDSS to promote acceptance and inclusion of people with Down syndrome and to raise funds for local and national initiatives that support people with Down syndrome and their families. The Buddy Walk began in 1995 as a public awareness and advocacy effort with 17 Walks. A fund raising component was added in 1999. Today there are 275 registered Walks with over 250,000 Walkers, which raise approximately $10 million annually across the country.

Charlie