5) How do you help affiliate organizations around the country?
NDSS is affiliated with over 350 organizations that provide an array of benefits to help better service the Down syndrome community in their regions. We view our affiliates as equal partners working on behalf of individuals with Down syndrome, their families, and the professionals involved with their overall welfare. Services and programs at an affiliate may include: new parent support and education, family meetings, recreational activities, lending libraries, Helplines, regional conferences, training for medical professionals and educators, and Buddy Walks®. Some affiliates are large operations and some are small neighborhood groups; they perform a variety of services, though nearly all have a parent support component.
NDSS links its affiliates to the greater Down syndrome community. New and expectant parents and members of local communities are referred to local affiliates through our toll-free Helpline, email service and www.ndss.org, the most accessed and comprehensive Down syndrome website on the Internet.
Affiliates receive NDSS educational materials, NDSS bulletins, NDSS National Policy Center Action Alerts, affiliate messages, and are invited to join our monthly affiliate webinars. Affiliate webinars are hour-long presentations conducted online by experts on a variety of topics related to Down syndrome. Past affiliate webinar topics have been: Respiratory Concerns in Children with Down Syndrome, Sibling Issues: What Your Other Children Without Down Syndrome are Thinking, Universal Design for Learning, and the NDSS My Great Story Public Awareness Campaign. In addition to the presentation, the webinars include an open Q&A with the presenter.
4) What is the NDSS Helpline? Who is it for, and how does it help people?
Through its toll-free helpline (800-221-4602) and email service (info@ndss.org), NDSS receives more than 10,000 requests a year for information on Down syndrome. The professionally staffed Goodwin Family Information and Referral Center responds to questions from parents, professionals, self-advocates and other interested individuals.
A trained NDSS representative is available to respond to email inquiries and phone calls between the hours of 9am and 5pm ET, Monday - Friday. The Goodwin Family Information and Referral Center is supported by a translation service that can be accessed in over 150 languages and publishes brochures and a new parent packet in English and Spanish.
3) What is My Great Story?
The My Great Story (MGS) public awareness campaign seeks to fuel a new way of thinking about people with Down syndrome by celebrating their accomplishments and achievements. Through sharing stories written by self-advocates, as well as their family members, friends, colleagues, teachers and many others, the campaign sheds light on the abilities of people with Down syndrome. The MGS online storybook has several sections in which participants can choose to share their stories, including family, friends, hobbies, education, travel, sports and several others. A holiday section rotates throughout the year and features stories that are relevant to the month or season. All are invited to join the campaign by reading the stories in the collection, and commenting and voting on their favorite submissions.
The MGS campaign was created pro-bono by NY based Ad Agency, Pedone. After 14 months of market analysis the Pedone team developed the MGS campaign theme in an effort to educate both those with a personal connection to someone with Down syndrome and the general public about the advancements and achievements being made by people with Down syndrome. The online story book was developed by CT based Interactive Agency York and Chapel, who spent over 12 months developing the user friendly technology, sophisticated design and esthetics. Two of the stories in the collection, The Public Speaker, by self-advocate Sara Wolff and The Traveler, by self-advocate Sujeet Desai, were made into print ads for the campaign that were shot by photographer Zachary Scott. TV Hosts Meredith Vieira and Nancy O’Dell, Actor John C. McGinley and Actor and NDSS Goodwill Ambassador Chris Burke joined in as well by staring in 30 second PSAs for the campaign.
The MGS campaign has garnered strong visibility in a profound timeframe. To date, over $6 million has been donated in national and regional ad space and services. The campaign has been seen by over 225 million people across the country and featured in media outlets such as Allure, Fortune, Glamour, Newsweek, Self, Time, USA Today, Vogue and Wired, among other noteworthy outlets. The My Great Story campaign has attracted other types of media as well, including placements in airports, bars, checkout counters and hospital patient and waiting rooms.
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
1) What are some of the biggest challenges people with Down syndrome and their families face?
Jordana Stern: People with Down syndrome attend school, work, live independently, participate in decisions that affect them, and contribute to society in many ways; however, there are some challenges that individuals with Down syndrome and their families commonly face. All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses. Despite this, students with Down syndrome face barriers to a quality education all too often.
People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives. In fact, the life expectancy of people with Down syndrome has risen significantly in recent years, increasing from 25 in 1983 to 60 today. As a result, for the first time, families of people with Down syndrome must plan financially to provide throughout this longer lifespan. Quality educational programs, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.
For more information on NDSS, please go to www.ndss.org
To donate towards my $1,000 goal for NDSS, please go to www.crowdrise.com/runningforsabrina
Charlie
