E-NEWSLETTER | MARCH 2013
Featured Story

World Down Syndrome Day is March 21!

World Down Syndrome Day is celebrated on March 21, symbolic of a third copy of the 21st chromosome that characterizes Down syndrome. We hope you're as excited as we are to celebrate! Here are some great ways to get involved:

  • Wear a t-shirt (and show us how it looks!). Last year, NDSS was proud to unveil a signature line of t-shirts featuring 3:21. The line has since expanded to include the popular kids design in all sizes (including adults) and sweatshirts and long sleeve t-shirts are now available for adults too. Last World Down Syndrome Day we aired a video featuring photos submitted of the signature collection. Now that we've expanded the collection we invite you to email photos of any of our signature items to info@ndss.org by Monday, March 18 for a chance to be included in this year's video. Check out the collection and snap a photo! 
  • Do you blog? Grab our blogger button and take the pledge to Do Something Extra on your blog in honor of World Down Syndrome Day. Encourage your readers to do the same in their own way!
  • Raise awareness in your hometown. There are lots of great ways to get involved on a local level, and our community ideas guide can help you do it! 
All of these ideas and more are included in the NDSS World Down Syndrome Day guide. We invite you to check it out and celebrate this March 21!
Resources
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 Sam Hazeltime of Charlestown, SC. Here is what Sam had to say about going to college. 

2013 O'Neill Tabani Enrichment Fund Applications Due March 15!

The O'Neill Tabani Enrichment Fund offers financial assistance to adults - 18 and older - who have Down syndrome and wish to continue to enhance their lives by taking classes or enrolling in postsecondary educational programs.

 

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 Tuesday, March 19 at 1:00 PM ET as we present Aging and Down Syndrome with Dr. Julie Moran. This is a special presentation in honor of World Down Syndrome Day and coincides with the release of the new NDSS publication Aging & Down Syndrome: A Health and Well-Being Guidebook.

 

Ways to Give
Fundraiser Focus

The Hampton Family


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.  

 

In January, blogger, author, photographer and mother Kelle Hampton set out once again to raise $100,000 in honor of her daughter, Nella.  She is more than 25% to her annual goal and has raised a collective total of more than $236,000 since her first NDSS fundraiser in October 2010 in support of their first Buddy Walk®. Nella's Triple Crown was established in celebration of Nella's third birthday.  

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

Thursday, March 21, 2013

Location: Greenwich Village Country Club at Bowlmor Union Square
110 University Place, New York, NY
Time: 7:00 - 10:00 PM
Casual Attire
Age 21+, All Abilities Welcome
$50 by 5:00pm on 3/20, $60 at the door
 
Celebrate World Down Syndrome Day in your area too!  Email NDSS VP of Development Pam Sandonato to learn more. 

 

  

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 Today; Correspondent, Dateline NBC; Author, Ten Years Later: Six People Who Faced Adversity and Transformed Their Lives

Featuring: The Melissa Riggio Voices Award, presented to an extraordinary young woman with Down syndrome

Celebrating: Mikayla's Voice, an organization that develops and supports inclusive programs that educate, inspire and empower kids of all ages and abilities

 
 

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  

 
READ MORE » 
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 Ryan Saharovich of Memphis, TN on winning the My Great Story of the Month Contest! Ryan's story received the most votes in February so he 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 the charity of the buyers' choice. Share your story and spread the word throughout the month to win this prize! 
 
 READ MORE »

My Great Story 3/21: World Down Syndrome Day Section
World Down Syndrome Day is coming up on March 21, and it's a great time to raise awareness for people with Down syndrome. We want to hear your plans! Whether you're celebrating at work or school, with friends or family, check out stories from previous years 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!


How I Found My Dream
By Steven Sauter, Canton, NY


I have always wanted to be an actor. That's my dream. I first started to act in 2005 when I joined St. Lawrence NYSARC Community Arts Program's Community Players, which is an acting group for young adults with disabilities who discover their creative talents onstage. When I started with the group I was really nervous and scared because I didn't know if I could do a good job and memorize all the lines. I wasn't sure how I would feel being in the spotlight all the time if I got a leading role, but I decided to try. The first play we did was an original play called "Murder on the Menu." I played the husband in the play which was a big role. Some people who were acting for the first time were nervous and did not remember their cue lines, but I did! I felt wonderful on stage and off.

 


My Little Brother
By Ryan Saharovich, Memphis, TN

My name is Ryan Saharovich and my younger brother Adam is easily the most inspiring person I have ever met. Adam was born with Down syndrome but that has never once stopped him from trying and succeeding in every aspect of life. From the time we were young children, Adam has taught me so many valuable life lessons about patience, happiness, and the simple joys that life really is about. He attends a public school in Memphis, TN, where he will graduate this May before he moves on to an amazing college-type program at the Stewart Home School in Kentucky. I could write a five hundred-page book detailing all the hilarious and inspiring stories about my brother.

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
Buddy Walk® T-Shirt Design Contest Winner
NDSS would like to congratulate Serkan Kutlubay for creating the winning t-shirt design, which will be available for all Buddy Walk events to use for their shirts and other promotional items. We would also like to thank everyone who submitted entries for the 2013 T-Shirt Design Contest for their time and effort. We were impressed by the number and quality of submissions and look forward to seeing their creative designs in our next contest!



New Buddy Walk® TV and Radio PSAs

The Imagination Movers will be recording new TV and Radio pubic service announcements (PSAs) for the Buddy Walk® this year. The Movers will also be recording the local tags for approved Buddy Walk® groups who request their PSAs before the May 17 deadline. 

 

Email NDSS National Buddy Walk® Director Rebecca Switalski to receive the PSA request form.

 

2013 Buddy Walk® Organizers: Registration is Now Open
We are excited to announce that registration for the 2013 Buddy Walk® season is now open. Please remember that a new registration must be completed each year in order for your group to remain a part of the national program. Once your Buddy Walk® registration is received by the NDSS office, a customized license agreement will be emailed to you. When the signed agreement is returned to the office (by email, fax or mail), your Walk registration will be processed.  

2013 Buddy Walk® Conference

Since the conference began in 2009, we have visited four different regions of the country. In an effort to make the conference accessible to all Walk organizers, in 2013 we will host the entire conference online. In 2014, the Buddy Walk® Conference will be in person again. We are putting the final touches on the schedule of events and encourage you submit topics to include in virtual breakout sessions. Registration will be opening soon, so stay tuned for more information. 

 

Email your suggestions to NDSS National Buddy Walk® Director Rebecca Switalski. Interested in being a presenter? Let us know that too! 


Advocacy
National Policy Center News
NDSS to Storm Capitol Hill at the Buddy Walk® on Washington

On March 13-14, NDSS will host our 2013 Buddy Walk® on Washington. We are pleased to have over 200 advocates from the Down syndrome community advocating for legislative issues that positively impact people with Down syndrome.

 

Following an awards ceremony, at which we will honor several individuals and groups with the 2013 NDSS Champion of Change awards, our advocates will experience an action-packed day on Capitol Hill, beginning with a reception in the US Capitol where NDSS will honor 10 senators and 10 representatives as our 2013 NDSS Legislative Leaders. In the afternoon, NDSS will take part in a press conference promoting the Achieving a Better Life Experience (ABLE) Act of 2013 and the Down Syndrome Research Consortium meeting. If you can't make the Buddy Walk® on Washington, you can still make your voice heard. We will issuing an advocacy alert, so you can contact your senators and representative about our 2013 legislative priorities.

 
Achieving a Better Life Experience (ABLE) Act is Back before the US Congress

The Achieving a Better Life Experience (ABLE) Act of 2013 (S. 313/H.R.647) was introduced in the 113th Congress by a bipartisan, bicameral set of Congressional Champions including Senators Robert Casey, Jr., (D-PA) and Richard Burr (R-NC), and Representatives Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), Cathy McMorris Rodgers (R-WA) and Pete Sessions (R-TX) on February 13. The ABLE Act earned 59 original House cosponsors and 18 original Senate cosponsors.

 

The ABLE Act would amend Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities. The bill aims to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing and transportation. You can do your part to pass the ABLE Act by contacting your senators and representative to cosponsor this important bill.

 
About NDSS

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

World Down Syndrome 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 offers advice and perspective to fellow self-advocates. This month, Chris discusses World Down Syndrome Day and what it means for self-advocates:
 

World Down Syndrome Day is on March 21. It is very important to us as self-advocates to be aware of our needs, and to let everyone know that we have rights just like anybody else. I know what it's like to have Down syndrome. I live with my disability but I have many abilities, and that's what World Down Syndrome Day means to me.


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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