Featured Story

NDSS Your Way in May

NDSS Your Way invites you to compete, celebrate and create with us through our online fundraising program that is geared towards independent fundraisers interested in raising money on behalf of NDSS. During the pilot year of NDSS Your Way, we worked with 45 new motivated individuals who collectively raised $60,000. NDSS was excited to bring previous fundraisers into the program as well, and we look forward to meeting and working with more new people looking to make a difference.


Join NDSS Your Way in May! As a participant in the program this month, each week your name will be included in a random drawing to win a great prize (previously registered participants are automatically entered).  A new winner will be contacted each Wednesday in the month of May.  The great news is that there are FIVE Wednesdays this month!


Prizes include:  

  • May 1: Handmade Upcycled Paper Flower Collage by LaraLeib Designs (retail value $40)
  • May 8: Sterling Sock Monkey Family Necklace by Mark Poulin (retail value $65)
  • May 15: Hand Selected Collection of Trinkets and Treasures by Darlybird (retail value $100)
  • May 22: Funky, fresh, smart and highly awesome box o' stuff from Blue Q, winner's choice (retail value $100)  
  • May 29: Bliss 4-in-1 Baby Stroller System by Contours (retail value $399.99)

Learn more about NDSS Your Way in May and how you can get involved! 


Dan Piper Award: Nominate a Self-Advocate!  

The Dan Piper Award was established to commemorate self-advocate Dan Piper's life by celebrating an individual with Down syndrome who, through everyday activities, brings about a greater public awareness and understanding of people with Down syndrome.  By living to his or her fullest, this person is an advocate for themselves and others with Down syndrome.


NDSS is currently seeking nominations for the Dan Piper Award, which will be presented on September 21 during the Flagship Buddy Walk® in New York City. 


Scholar Spotlight

Since 2005, NDSS has provided financial assistance to more than 75 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! Sixteen outstanding students who have Down syndrome were awarded scholarships to help cover the cost of their postsecondary or enrichment courses. 

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 Wednesday, May 22 at 1:00 PM ET as we present Strengthening Your Relationship: Perspectives from Mothers and Fathers Raising Children with Down Syndrome with Dr. Laura Marshak and Courtney Williams. This presentation will cover relationship concerns and useful strategies for families with children who have Down syndrome and/or other disabilities. 

Ways to Give

Shop NDSS for Mother's Day 

This month, we are pleased to introduce a new Shop NDSS partner offering a unique gift for bloggers just in time for Mother's Day.  

Blog2Print turns your blog into a wonderful keepsake in a few simple steps. From online posts and photos to the printed page, your blog book is a memento of all your writing. It's the perfect gift with a personal touch that's sure to make your blogger smile. Print your blog as a book today, with Blog2Print.  Books start at $14.95 and 10% of every purchase is donated to NDSS
using this link. Enter the code NDSS at checkout to make sure a portion of your purchase is counted as a donation.


For a great Mother's Day gift idea, give your blogging Mom an e-gift card to design her own Blog2Print book.    


Visit Shop NDSS for other Mother's Day gift ideas that give back to NDSS.




Fundraiser Focus

Megan Abner  

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.  


We are proud to introduce Megan Abner as the first self-advocate participant in NDSS Your Way. Megan's fundraising campaign coincides with the publication of her first book titled, Up Syndrome: It's All About the Attitude in which she chronicles her life with Down syndrome.  This autobiography is unedited and shares a real picture of life's "ups and downs." It is available for purchase on Amazon and proceeds from the book will be donated to NDSS.


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 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 Evite 

Golf Outing Website 


NDSS 19th Annual Flagship Buddy Walk® in New York City

Saturday, September 21, 2013
Location: The Great Hill at Central Park, New York, NY


Flagship Buddy Walk® in New York City Information

Registration Coming Soon




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 of the Month Contest
Congratulations to Lisa Rowland of West Hartford, CT on winning the My Great Story of the Month Contest! Lisa's story received the most votes in April 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 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: 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!

Jamie is Inducted into the National Honor Society
By Lisa Roland, West Hartford, CT

Our son, Jamie, will be inducted into the National Honor Society on April 24th. This accomplishment is a testament to his hard work throughout his schooling. He is like most other 18 year old high school students; he likes to hang out with his friends, listen to music and watch YouTube videos. He is championed by his friends and teachers for all that he has accomplished because Jamie has Down syndrome. Jamie responds to his special challenges by studying diligently each day, reading books and keeping in close contact with his teachers by email. He is a wonderful young man with incredible potential.


Just One of the Boys
By Rose Godfrey, Brownsville, CA

When we brought our son Dominic home from the hospital, his older brothers had a lot of questions.

"Mom, what is Down syndrome?" Max asked.

"Down syndrome is what happens when a person has one extra chromosome," I said.

"But what is a chromosome?" Max asked.

"A chromosome is a set of instructions. You know how sometimes I tell you something to do and then your sisters come in and boss you around and each of them tells you what to do, and things get confusing?"

Both my boys nodded vigorously.

"Well, chromosomes tell a baby how to start growing inside the mom. When there are too many instructions in there, things can get confusing."

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 Times Square Video Contest is Now Open for Submissions!

On Saturday, September 21, NDSS will kick off Down Syndrome Awareness Month and the New York City Buddy Walk® with our annual Times Square Video, featuring photos of people with Down syndrome from across the world. We invite you to submit a photo for this one-of-a-kind feature presentation!  The contest will run from May 1 - July 10.


2013 Buddy Walk® Registration

Buddy Walk® events must be registered each year with NDSS. If you have already registered your Walk for this year, you do NOT need to register again. If you have not registered your Walk, please do the following:  

  • Log in with your user name and password from last year.
  • Once logged in, click on "Register a Buddy Walk®" and complete your Walk registration.
  • A custom license agreement will be emailed to you once your registration has been reviewed.

If you are interested in organizing a Buddy Walk® for the first time, visit the Steps to Register page to get started.

National Policy Center News
NDSS Response to the Tragic Death of Robert Ethan Saylor

NDSS remains committed to ensuring necessary and comprehensive actions are implemented to make sure tragedies like the death of Robert Ethan Saylor will never happen again. NDSS continues to work with the Saylor family, the family's attorneys, NDSC, and our local affiliate in Frederick, MD, the Family Resource Information and Education Network for Down Syndrome (F.R.I.E.N.D.S.), which was founded by Patti Saylor, Ethan's mother. Last month, we launched our comprehensive plan and continue to implement its components. We issued letters to the US Department of Justice (DoJ) Civil Rights Division and the Department of Maryland State Police calling for an independent investigation. We've also participated in a series of meetings with the DoJ to pursue the investigation and will continue to do so, especially in light of recent developments. For more information, contact us directly at info@ndss.org or 800-221-4602.


Achieving a Better Life Experience (ABLE) Act Continues to Garner More Support in the US Congress 

NDSS continues to push for the Achieving a Better Life Experience (ABLE) Act of 2013 (H.R. 647/S.313) to gain more cosponsors and to be passed this year! Currently, we have 30 cosponsors in the Senate and 140 cosponsors in the House. NDSS submitted a letter to the Education & Family Benefits Working Group of the House Ways & Means Committee, which is chaired by Congresswoman Diane Black (R-TN) and Congressman Danny Davis (D-IL), on the ABLE Act. You can continue to do your part to advocate for the ABLE Act and take action by calling or emailing your members of Congress! 


Become an NDSS DS-Ambassador Today!

Are you interested in becoming 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. Please email NDSS Grassroots & Development Manager Ginny Sessions about becoming an NDSS DS-Ambassador!


NDSS 2013 Down Syndrome Congressional Art Competition 

NDSS is pleased to announce our first-ever Down Syndrome Congressional Art Competition for artists with Down syndrome. The chosen artwork be displayed around the Washington, DC area: in a Congressional office on Capitol Hill, the new NDSS DC office or a local DC venue. A timeline and process for artists' submissions will be available soon.  


About NDSS
Straight Talk with Chris Burke

Happy Mother's Day!

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 reflects on his relationship with her mother and how she raised a child with Down syndrome.

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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