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World Down Syndrome Day at NDSS

At NDSS, we had an amazing day on March 21 for World Down Syndrome Day! Here are some highlights from this year's celebrations:

  • World Down Syndrome Day was a big day for the NDSS Facebook page, with our most popular post ever! The post has over 9,000 shares, over 6,000 likes and over 120 comments, which have yielded over one million impressions.  
  • We premiered a new 3:21 t-shirt video, which includes submitted photos from families in their 3:21 gear. 
  • NDSS joined advocates from around the world at the United Nations for the second annual World Down Syndrome Day conference. NDSS DS-Ambassador John Anton spoke about his internship on Capitol Hill at Congresswoman Cathy McMorris Rodgers' (R-WA) office.
  • In Boston, MA, NDSS VP of Marketing Julie Cevallos and NDSS Goodwill Ambassador Chris Burke attended the premiere of the My Great Story Video Project, which also launched on our website on World Down Syndrome Day. 
  • CNN covered the My Great Story Video Project, highlighting one story and posting images and quotes from each of the families in the My Great Story Video Project.
  • In New York, NY, the NDSS Young Leadership Event was a success!  
  • NBC Today Show Co-Host Savannah Guthrie covered World Down Syndrome Day on Today.com in a moving piece about her Uncle Pierce and included a link to the My Great Story campaign.
  • Lots of people have shared their World Down Syndrome Day stories with the My Great Story campaign's 3/21 section (it's not to late too share yours too!).   
Thank you to all who joined our World Down Syndrome Day celebrations online or in person. It's never too late to keep raising awareness for people with Down syndrome! Check out the NDSS World Down Syndrome Day Guide for ideas and inspiration.
Scholar Spotlight

Since 2005, NDSS has provided financial assistance to young adults with Down syndrome who choose to take classes or enroll in postsecondary educational programs, through the O'Neill Tabani Enrichment Fund. Congratulations to this year's O'Neill Tabani Enrichment Fund recipients! Eleven outstanding students who have Down syndrome were awarded scholarships to help cover the cost of their postsecondary or enrichment courses, including Geoffrey Steggell of Newark, DE. Here's what Geoffrey had to say about his college experience. 

Webinar Series
Each month, NDSS provides a free educational webinar to anyone who is interested in learning more about various topics relating to Down syndrome, including health, education, advocacy, family life, research and more.

Join NDSS on Friday, April 26 at 3:00 PM ET as we present Self-Advocates Speak Out with the NDSS Self-Advocate Advisory Board. This presentation is intended for self-advocates, professionals and parents. Members of the NDSS Self-Advocacy Advisory Board will discuss what it means to be a self-advocate, ways self-advocates can begin advocating for themselves and how organizations can incorporate self-advocates into their programming.


Ways to Give
Fundraiser Focus

Lisa Wilen  

NDSS is energized by motivated people who contact us about wanting to make a difference in their community and on a national level. Each month, this section features an individual, family or group who has donated time and energy to creating exciting ways to support the value, acceptance and inclusion of people with Down syndrome by raising awareness and money for NDSS.  


Every family has a story...and every locket tells a story! Origami Owl Independent Designer Lisa Wilen has partnered with the National Down Syndrome Society to do an online fundraiser in celebration of World Down Syndrome Day on March 21. Lisa has several friends who have children with Down syndrome and she is paying it forward by generously donating 20% of sales from her website to NDSS from now until April 15.


Flagship Events
NDSS hosts several annual events in the New York Metro Area. Our events are growing and we are pleased to welcome people from across the country as our guests. Please consider joining us at one of our upcoming events. 


NDSS Young Leadership Committee Celebrates World Down Syndrome Day

NDSS thanks the more than 100 young leaders that joined us at Greenwich Village Country Club in New York City in celebration of World Down Syndrome Day. More than $8,000 was donated to NDSS in support of this event. Special thanks to the NDSS Young Leadership Committee that made this event happen!



NDSS Spring Luncheon

Tuesday, May 14, 2013

Location: 583 Park Avenue, New York, NY

Time: 11:30 AM - 2:30 PM
Honoring:  Hoda Kotb, 
Co-Host, Fourth Hour of NBC's Today

Featuring: The Melissa Riggio Voices Award, presented to Jordyn Dannenbaum

Celebrating: Mikayla's Voice

NDSS 17th Annual Golf Outing

Monday, June 17, 2013
Location: Baltusrol Golf Club, Springfield, NJ
Honoring: Mark A. Victor Pinho
Shotgun Start (Best Ball Format) at 11:00 AM 


Golf Outing Printable Invitation 

Golf Outing Website 


My Great Story
My Great Story, the largest NDSS public awareness campaign, seeks to ignite a new way of thinking about people with Down syndrome by sharing stories written by and about them. Self-advocates and their family members, friends, coworkers, teachers, coaches, therapists and everyone with a connection to someone with Down syndrome are encouraged to share their stories!


My Great Story Video Project
NDSS is excited to announce the My Great Story Video Project, which features 10 short videos based on submitted stories to the My Great Story public awareness campaign. NDSS thanks Producer and Director Melanie Perkins McLaughlin for her hard work and dedication to this project over the past year. All are encouraged to check out the new tab within the My Great Story site and watch all 10 videos!


My Great Story of the Month Contest
Congratulations to Joni Woodring of Brownston Township, MI on winning the My Great Story of the Month Contest! Joni's story received the most votes in March so she will receive a $75 gift certificate to Rhyme & Reason, the company behind the NDSS signature 3:21 line for men, women and kids!
NDSS thanks Rhyme & Reason for sponsoring the My Great Story of the Month Contest throughout 2013. The author of the story with the most votes each month will win a $75 gift certificate to Rhyme & Reason. For every NDSS signature item purchased, Rhyme & Reason will donate $5.00 to NDSS. For every regular item purchased, they'll donate 10% of the price to NDSS when National Down Syndrome Society is selected at checkout. Share your story and spread the word throughout the month to win this prize! 

My Great Story: Share Your World Down Syndrome Day Story!
At NDSS, we had a great day on March 21 as we celebrated on World Down Syndrome Day - we hope you did too! Whether you celebrated at work or school, with friends or family, check out the stories in the My Great Story campaign's 3/21: World Down Syndrome Day section and submit yours to the collection!
My Great Story: Stories of the Month
Each month, the two stories with the most votes in the My Great Story collection are featured in this section. The votes are reset at the end of each month.


Visit www.ndss.org/stories to check out the campaign and click the submit bookmark to share your story!

My Angel Annie
By Joni Woodring, Brownston Township, MI

October 5th was just another morning until I was admitted into the hospital for an emergency C-section with the fetus in breach position. With my last child, and against my wishes as I wanted to deliver normally, RN Sharla tried to help me get the baby to flip around by setting ice packs on my tummy to try to move her. After several hours and no change we were rushed into the ER once daddy arrived. At 4:18pm we heard our baby girl cry.


Jack Teaches the Speech Therapists
By Jack Piscitell, Weston, CT

Hi, my name is Jack. I am 13 years old. Recently, I taught a class at Columbia University's Teachers College. I really liked being the teacher. This was a class of people learning to be speech therapists. I know a lot of speech therapy. I have gone to speech therapy for 13 years.

Buddy Walk®
Join over 285,000 people at one of over 250 Buddy Walks® to promote the value, acceptance and inclusion of people with Down syndrome in their own communities. Learn more about the National Buddy Walk® Program and find a local Walk in your area! 
NDSS has many ways to stay up to date on all the latest Buddy Walk® news: on  Facebook,  Twitter and the  Buddy Walk® Pinterest Board. Thank you to everyone who has shared photos and highlights and with us. We look forward to receiving more! 
We also encourage everyone to share their Buddy Walk® stories and photos with the My Great Story campaign, so we can all read about Walks across the country! 

Buddy Walk® News
The 2013 Buddy Walk® Organizers' Conference is Almost Here!    

The 5th Annual Buddy Walk® Conference is approaching quickly. We are putting the finishing touches on what will be a time to invigorate, encourage and enrich Walk Organizers from across the country. The conference will take place on Friday, April 26 and Saturday, April 27 from 11:00 AM - 3:00 PM ET and you can attend from your home or office - wherever you are!

The Buddy Walk® Program Ranks Nationally 

NDSS is proud to be recognized by the Run Walk Ride Conference, a national event organized by the Cause Marketing Forum, which was held in March. Once again, NDSS is ranked alongside the nation's leading charitable organizations, and was the 10th fastest growing program in 2012!



National Buddy Walk® Partners

NDSS would like to recognize our 2012 National Buddy Walk® Partners for their incredible support of the Down syndrome community and the 250 Walks that took place around the country and overseas this year. We are excited to announce two new national sponsors for the 2013 Buddy Walk Season:  BandAbout and GoodThreads. For a complete list of our national partners and their contributions to the Buddy Walk, please visit our National Buddy Walk® Partners page or Pinterest board


National Policy Center News
NDSS 2013 Buddy Walk® on Washington

NDSS hosted our annual Buddy Walk® on Washington on March 13 - 14 in Washington, DC. The two-day advocacy event brought over 220 individuals from across the country to our nation's capital to advocate for legislative priorities that positively impact the lives of people with Down syndrome and their families. Advocates from the Down syndrome community met with more than 300 members of Congress to bring our issues to the forefront of their agendas. A special thanks goes to the advocates from around the country that took part in the 2013 Buddy Walk® on Washington. If you weren't able to join us, you can do your part to advocate for people with Down syndrome by taking action to contact your senators and representatives about our 2013 legislative priorities.

We Want You! Become an NDSS DS-Ambassador

The NDSS DS-Ambassador program is a 50-state initiative that supports our mission to advocate for the value, acceptance and inclusion of people with Down syndrome. NDSS DS-Ambassadors are volunteer advocates committed to taking part in the democratic process and serve as liaisons between NDSS and their respective Congressional Delegations. The goal of the DS-Ambassador program is to build long-lasting relationships with US Senators and US Representatives to continue to raise awareness, educate and advocate for public policy solutions that benefit the Down syndrome community. Each month, DS-Ambassadors are asked to work with NDSS on special assignments to advance the organization's advocacy efforts and to share their story with important decision makers. Are you interested in becoming an NDSS DS-Ambassador?  Email NDSS VP of Advocacy & Affiliate Relations Sara Weir to learn more. 

About NDSS

Aging and Down Syndrome: A Health & Well-Being Guidebook

NDSS is pleased to announce the release of our new publication, Aging and Down Syndrome: A Health & Well-Being Guidebook, available online and in print - free of charge. This groundbreaking resource for families and caregivers of adults with Down syndrome covers medical issues commonly encountered in adulthood, as well as how to provide person-centered care.

Casting Call: Toys "R" Us Toy Guide for Differently Abled Kids

NDSS is pleased to announce that our corporate partner, Toys"R"Us, is looking for models for their annual Toys "R" Us Toy Guide for Differently-Abled Kids. The Guide gives parents and friends of children with disabilities an easy-to-use resource to find toys that offer them the best opportunity for fun and learning. They are seeking children age 12 months to 10 years to model for this year's guide. Read more about the Guide and how you can submit your child's photo for consideration!  
Straight Talk with Chris Burke

Spring is Here! 

NDSS Goodwill Ambassador Chris Burke is best known for his role as Corky Thacher on the hit ABC show "Life Goes On." Chris works in the NDSS office, where he is a member of the staff. In this monthly column, Chris offers advice and perspective to fellow self-advocates. This month, Chris writes about springtime. 


NDSS in the Media
NDSS is pleased to work with so many people across the country who help us further our mission of promoting the value, acceptance and inclusion of people with Down syndrome. We thank those who covered NDSS in the media this month. 
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