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My Great Story Campaign for Mother’s Day

May 8, 2011 in Featured, Featured Group, From Julia by Julia Roberts

A Forum to Share Her Story

NDSS & The My Great Story Campaign join together to raise awareness for Down syndrome in celebration of Mother’s Day.

Today, Mother’s Day 2011, the National Down Syndrome Society (NDSS) will celebrate the accomplishments and achievements being made by people with Down syndrome by honoring their mothers. The My Great Story (MGS) public awareness campaign seeks to ignite a new way of thinking about people with Down syndrome by collecting inspirational stories told by people with Down syndrome and their family members, friends, colleagues, and many others. NDSS has added a new section in honor of Mother’s Day. Participants share a story about their mothers, grandmothers, sisters, aunts, cousins or friends who have a son or daughter with Down syndrome. Anyone can comment or vote on the stories already in the collection. NDSS invites you to cover the MGS campaign, post, tweet and blog about it, and promote reposting, retweeting and more sharing amongst your audience.

NDSS also invites you to watch the two MGS Celebrity PSAsthat star TV Hosts Meredith Vieira and Nancy O’Dell and post them to your media outlet’s website. Vieira’s dedication to the MGS campaign stems from her relationship with her son, who has worked as a camp counselor for people with Down syndrome, and O’Dell was drawn to campaign through her fond memories of her mother’s sister, who had Down syndrome. Both Vieira and O’Dell have also submitted stories to the campaign that speak to their experiences.

Down syndrome is the most commonly occurring genetic condition, in which the individual has a third copy of the twenty-first chromosome. One in every 691live births is a baby born with Down syndrome, and it is the most commonly occurring chromosomal condition. People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.

People with Down syndrome are living longer than ever before. The life expectancy of individuals with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today. Children with Down syndrome are often fully included in social and educational settings and increasingly go on to graduate high school and attend postsecondary education programs. While placement in the workforce remains a struggle, the situation has improved and adults with Down syndrome have attained a variety of positions, bringing enthusiasm, reliability and dedication to their jobs.

We encourage you to get involved and help NDSS and mothers of people with Down syndrome everywhere to raise awareness for people with Down syndrome.

About My Great Story

MGS was created pro-bono by NY based Ad Agency, Pedone. After 14 months of market analysis the Pedone team developed a campaign in an effort to shape the future for all 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, and incorporation of the spectacular print ads shot by Zachary Scott. To date, over $5 million has been donated in national and regional ad space and services. The campaign has been seen by over 175 million people across the country and featured in media outlets such as Allure, Fortune, Golf Digest, The New Yorker, Newsweek, Time, Vogue and Wired, among other noteworthy outlets. To learn more, visit www.ndss.org/stories

About NDSS

The National Down Syndrome Society is a nonprofit organization representing the more than 400,000 Americans with Down syndrome. The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity enhance their quality of life, realize their life aspirations, and become valued members of welcoming community. NDSS has over 350 affiliates nationwide. To learn more, visit www.ndss.org.

The puzzle of learning disabilities

December 10, 2010 in Insider Insight by Admin Dawn

by Jill Lauren

To be learning disabled – meaning that a person is of average to above average intelligence with a processing deficit that makes learning challenging – is tremendously puzzling. How can one be smart, yet have trouble learning in school? This conundrum has perplexed many, including myself when I began to study various aspects of learning. In fact, I sat in a class about learning disabilities at Northwestern University for almost an entire semester without truly understanding the syndrome until a classmate explained it to me. I remember that moment clearly because I found the paradoxical nature of learning disabilities fascinating and decided to pursue a career as a special education teacher.

Kids want answers, too

When I started teaching, it was no surprise to me when my learning disabled students explained that they were completely confused by why they needed extra academic support; after all, their parents and teachers were often telling them how smart they were. Soon I realized that not only did I need to teach specific skills, but I also needed to educate my students as to what a learning disability actually was. Typically, I found that my students started questioning their academic capabilities around third grade. Prior to that time, coming to the resource room and getting stickers was reason enough to be there! By third grade, kids are more aware of who they are, in relation to their peers, and want answers.

One afternoon, I took a student named Margaret out for ice cream because though she was typically a happy child, she was becoming increasingly concerned and saddened about her academic challenges. When I asked her, “Why do you think school is hard?” she responded, “Because my parents said I have a learning disability.” I was completely surprised that she knew this term. Then I asked, “What’s a learning disability?” Her answer, “I don’t know, my parents didn’t tell me that,” helped me to fully recognize my responsibility to find a way to make the mystery of LD understandable to a third grader. I reached for the one aspect I felt could make the concept real: role models. Back in the 1980s, Tom Cruise, Cher and Bruce Jenner topped the list of success stories of people with learning disabilities. As I explained what I knew of each person, Margaret’s eyes lit up. There were other people out there like her – and they were not only successful, but also famous. My explanation completely legitimized her experience and gave her a sense of hope. She also felt proud to be just like Tom, Cher and Bruce such that she suggested to me, “There should be a book for kids like me about people with learning disabilities.” I promised Margaret I’d find that book. When I couldn’t find it, I decided to write it.

Sharing our stories is a gift to our kids

My first book, Succeeding with LD, was written in 1997, and it was dedicated to Margaret. It contained twenty-two profiles of regular folks, children and adults, with learning disabilities. I was uncomfortable profiling famous people, as I was concerned that most kids would not believe that they could really be like them. Years later, Rick Lavoie confirmed that suspicion when he shared an anecdote about a teenager who told him, “I have pimples and a big nose. What do I have in common with Tom Cruise?” Of course, when public figures share their learning challenges, it is a gift to kids. For the purposes of a book, however, I wanted students to be able to hold a book in their hands that contained at least one person with whom they could truly relate. Succeeding with LD was recently reprinted in a third edition that contains updated profiles of twenty-one of the original stories.

Last year, my publisher asked me to write a new book for younger children with learning disabilities that also profiled success stories. That’s Like Me! contains fifteen new profiles and includes a foreword by Caldecott winner Jerry Pinkney, who is also dyslexic. It is a full-colored picture book and was honored by the New York Branch of the International Dyslexia Association with the Margot Marek Award for the “most outstanding book written for adults or children with dyslexia or related learning disabilities.” I shared this award with the thirty-seven people who so courageously told their stories in both of my books in order to comfort and inspire others. I am completely honored and humbled to have been given the opportunity to bring such honest and heart-warming stories to people with learning disabilities. Many of the people in the books have become dear friends. They join me on panels to discuss various ways that people with LD can pursue their own dreams, like they did.

And where is Margaret these days? After being told by an advisor that she should not go to college, but should instead pursue a career in retail, she obtained a Masters in Social Work from Columbia University after years of grueling study. Margaret also joins me on panels, as she is now a role model herself. We often reflect on the conversation we had when Margaret was in third grade, the impact of which led to the creation of two books and have comforted so many people with learning disabilities.

Jill Lauren has a B.S. and M.A. in Learning Disabilities from Northwestern University. She has been teaching LD students of all ages for over twenty-five years. Known as an expert in the area of reading and writing, Jill has trained teachers around the country to utilize a variety of structured, multi-sensory approaches to the instruction of reading and written language. Jill has also worked with various schools to implement successful reading programs.

Yankees bring special needs children to stadium

August 24, 2010 in Special Needs News by Admin Dawn

His oxygen tank behind him, 16-year-old Daniel Fratto settled into his seat high above home plate, slipped on the headphones and calmly spoke into the microphone.

“Now batting for the Yankees, No. 2, shortstop Derek Jeter, No. 2.”

And with that, Fratto became one of the few people to announce Jeter at Yankee Stadium.

Fratto came to the ballpark Thursday as part of Hope Week, a five-day charity event organized by the team that celebrates those who help others. The high school junior is part of Beautiful People, a group that enables special needs children to play sports.

Fratto has immune deficiency syndrome and travels with his portable 10-pound tank. Though he cannot be physically active, he does his part: Fratto announces the games.

The matchup between the Yankees and Detroit Tigers gave him the chance to take his talent professionally, if only for half an inning.

Fratto was unshakable. Asked if he was nervous about announcing in front of 48,000 people, he said no.

“If I mess up, I mess up,” he said. “What’re you going to do? The difference is that I mess up at Yankee Stadium, and I’ll remember it for the rest of my life.”

Fratto did just fine.

via Yankees bring special needs children to stadium – USATODAY.com.

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