E-NEWSLETTER | FEBRUARY 2013
Featured Story

World Down Syndrome Day is Coming Up!

World Down Syndrome Day is celebrated on March 21, symbolic of a third copy of the 21st chromosome that characterizes Down syndrome. At NDSS, we're excited to celebrate with you! We invite you to share a story, wear a t-shirt, host a bake sale, read a book, post, tweet, share, blog - all for Down syndrome!

 

Check out the NDSS 2013 World Down Syndrome Day Guide and get involved!

 

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 Michael Kozicki of Tucker, GA. Here's what Michael had to say about how why he wanted to pursue postsecondary education. 

2013 O'Neill Tabani Enrichment Fund Applications Available!

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.

On Wednesday, February 20th at 1:00 PM ET, NDSS will host a presentation by Meg Grigal and Debra Hart, co-authors of  Think College!: Postsecondary Education Options for Students with Intellectual Disabilities. They will provide a big picture perspective on the current landscape of postsecondary education options for students with intellectual disabilities. 

 

Register for this webinar.

 

Ways to Give
Fundraiser Focus

Courtney Formicola


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.  

 

Courtney Formicola recently graduated from the University of Notre Dame and is currently enrolled at Columbia University in a clinical psychology graduate program, where her focus is on children with developmental disabilities and their families. Courtney joined Team NDSS with an abundance of enthusiasm after signing up to run her first half-marathon in honor of her brother, Tommy, who has Down syndrome

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 Gala & Auction

NDSS congratulates the 2013 Gala Honoree, Dolores CortÚs USA / LC Attraction LLC, for their leadership in a new wave of fashion industry standards, and thanks Savannah Guthrie (NBC Today) for her participation as Master of Ceremonies. The event was a great success and we thank everyone who participated.

 

Check our Facebook page for the event photo album, 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 Linden Rigler of Kalispell, MT on winning the My Great Story of the Month Contest! Linden's story received the most votes in January so she will receive a $75 gift certificate to Rhyme & Reason clothing!
 
NDSS thanks Rhyme & Reason clothing 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!


Trapped
By Linden Rigler, Kalispell, MT
 

As a little girl of eight years, I couldn't wait to meet my first little brother, James. James was born a king, or at least I thought so. Why else would he have a little crown on his head just a day after being born? Truth is, James was born with Down syndrome. The crown covered up all the wires going into his little body following heart surgery. Even when the crown came off, James was still the king in my eyes. He was patient, loving, and had a smile that could stop you in your tracks.  

 

My Hero
By Nick Ordo˝ez, Huntington Beach, CA


Today, January 8, is my brother's birthday. His name is Jonathan Ordo˝ez. 20+ years ago, when I was seven years old, I took it upon myself to read in the encyclopedia about Down syndrome and learn more about my brother. I read that there was no cure and that my brother would always be disabled. I read that he wouldn't exceed the mental age of a seven-year-old child. I read that my brother would not live past 20-25 years old.

 


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 Coming Soon!
2011 Contest Winner, Created by Richie Hollins
 
 
Thank you to all who participated in the 2013 Buddy Walk« season t-shirt design contest. The selected design will be featured on the t-shirt at the Flagship Buddy Walk« in New York City. It will be available to all other Walks in 2013 and the winning artist will receive recognition on the NDSS Buddy Walk« site for the entire year. We received lots of great entries and look forward to announcing the winner soon!



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

Plans are underway for the 5th Annual 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.  

 

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
A Message from Congresswoman McMorris Rodgers (R-WA) on the 2013 Buddy Walk« on Washington
The 2013 NDSS Buddy Walk« on Washington will be held on March 13 - 14 in Washington, DC and registration is still open! The Buddy Walk« on Washington is our annual advocacy conference, where advocates from across the country come together to advocate for legislative priorities for people with Down syndrome and their families. We recently launched the NDSS Advocacy Spark, which offers a quick proactive way to take action and register after watching a short video featuring Congresswoman McMorris Rodgers (R-WA) and encouraging participating in the 2013 Buddy Walk« on Washington. The Spark can be emailed, posted on Facebook or Twitter, embedded in a website, blog or a number of other outlets. Check it out and share it today!
 
Achieving a Better Life Experience (ABLE) Act to be reintroduced in the 113th Congress  
The Achieving a Better Life Experience (ABLE) Act will be reintroduced on February 4 in the US Senate and House respectively by Senators Robert Casey, Jr. (D-PA) and Richard Burr (R-NC); and Representatives Ander Crenshaw (R-FL), Cathy McMorris Rodgers (R-WA), Pete Sessions (R-TX) and Chris Van Hollen (D-MD). The 113th Congress was recently sworn into office, so pending legislation like the ABLE Act of 2013 must be presented to the new Congress. During the 112th Congress, over half of the entire US Congress (236 Representatives and 41 Senators) supported this important legislation. We need the Down syndrome community's help to ensure the ABLE Act garners this much support and more in this new Congress. Click below to take action.
 

An Update on the Convention on the Rights of Persons with Disabilities

On Wednesday, February 13 at 1:00 PM ET, NDSS will provide a webinar presentation on the Convention on the Rights of Persons with Disabilities (CRPD) in conjunction with United States International Council on Disabilities. CRPD seeks to ensure that countries across the globe provide people with disabilities the same rights as everyone else in order to live full, satisfying and productive lives. We will be joined by Executive Director David Morrissey and Disability Rights Program Manager Esme Grant of the United States International Council on Disabilities to provide information about CRPD and its importance to the Down syndrome community.  NDSS, along with 300 national organizations, supports the US ratification of CRPD.

 
About NDSS

Calling All Bloggers!

Do you blog? We want to hear from you! NDSS is looking to connect with bloggers for another great year of our World Down Syndrome Day blogger button campaign! We'll be sending out the details soon, so if you'd like to receive more information please email your name, blog title and URL to NDSS Communications & Social Media Manager Jordana Stern. We look forward to connecting with you!

Straight Talk with Chris Burke

President's Day

Chris Burke at the White House with President George H.W. Bush and Actress Patricia Neal
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 President's Day and what it means for people with disabilities: 
 
President's Day is one of my favorite holidays. When I was in school, I loved learning about the famous presidents in social studies class. I still like to study the presidents today through books and movies. We can learn a lot from their life stories. 
  
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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