E-NEWSLETTER | OCTOBER 2013
Featured Story

October is Down Syndrome Awareness Month! 


Down Syndrome Awareness Month is here! At NDSS we are so excited to celebrate. Here are just a few great ways to get involved:    

  • It's Buddy Walk� season! Most Walks are held in and around October in honor of Down Syndrome Awareness Month. Walk together for Down syndrome!
  • The 2013 Times Square Video is now available to view on the NDSS YouTube channel and to purchase for your collection (you can also see what it looked like on the big screen when it aired live)! 
  • Are you inspired by someone with Down syndrome? Share your story with the My Great Story campaign!  
  • Compete, celebrate or create a unique fundraising campaign with NDSS Your Way!   
  • Share the many NDSS resources, including our Down syndrome facts, myths & truths and preferred language guide with friends and family, teachers, colleagues and via social media!   
  • Check out and share our new "Get to Know Me" inclusion posters and lesson plans in your local schools! 
  • Become an NDSS DS-Ambassador and advocate for people with Down syndrome with members of Congress!    

Much more where these came from! For more information and other ideas, check out our Down Syndrome Awareness Month page at ndss.org/DSAM2013. 

 

Resources

National Institute of Health (NIH) DS-Connect Patient Registry

NDSS is excited to be a part of DS-Connect, the new Down syndrome registry hosted by the National Institutes of Health (NIH) and the Down Syndrome Consortium. The goals of DS-Connect are to gain a better understanding of Down syndrome, to learn more about the health issues associated with Down syndrome, to develop new treatments for Down syndrome and to improve care for people with Down syndrome. Mitchell Levitz, NDSS Self-Advocate Advisory Board Member, encourages people with Down syndrome to participate in research through DS-Connect through his letter to the Down syndrome community. 

 

  

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, including Matthew Green of North Palm Beach, FL. Read what Matthew had to say about going to college.

 

READ MORE 


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. 
 

This October, NDSS will celebrate Down Syndrome Awareness Month by holding a webinar double feature including two perspectives from one family. Join us Tuesday, October 22 at 1:00 PM ET for part one: Visions, Dreams and Goals, an overview of Self-Advocate Craig Blackburn's life philosophy and triumphs. Part two, A Mom's Journey, will be held on Wednesday, October 30 at 1:00 PM ET will feature Craig's mom, Patricia Ehrle, who will provide a behind-the-scenes glimpse into raising a man with Down syndrome and finding sources of support and motivation along the way. 

  
 
Ways to Give

1StopLighting.com Partnership

Celebrate Down Syndrome Awareness Month and help us brighten the lives of people with Down syndrome by supporting our month-long partnership with 1StopLighting. 1StopLighting has been fulfilling lighting needs since 2003 and actively works to give back. For the month of October, save 15% off any Golden Lighting purchase at 1StopLighting.com and $5 will be donated to NDSS per order.  Use coupon code NDSS15 to get your savings and contribute to NDSS! 

  

Golden Lighting has a lot of fixtures to choose from including vanity lights, wall sconces, ceiling lights and chandeliers that could fit in just about any room in the house. 

  

  

Fundraiser Focus

Russell Moore   


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.  

 

On August 18, at South Sound Speedway in Rochester, WA, the first ever South Sound Summer Jam took place thanks to Russell Moore and a team of dedicated coworkers, friends and volunteers. Russell Moore is the Internet Parts Manager at Olympia Nissan. He is the father of three boys; the youngest was born with Down syndrome in November 2012. While Olympia Nissan has organized several charity car shows in past, this was the first year they moved the event to a large speedway and included a national organization as one of the beneficiaries. Participants traveled from all over the area to enjoy an impressive car show and to experience a tandem drift competition involving some of the best drivers in the northwest, among other highlights.

 
 
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 attendees. Please consider joining us at one of our upcoming events.

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

On September 21, 2013, NDSS was joined by 1,800 people at the 19th Annual Flagship Buddy Walk� in New York City to honor and celebrate individuals with Down syndrome in our communities. To date, $150,000 has been donated to NDSS by 3,000 donors in support of this event. 

 

The Flagship Buddy Walk� kicked off in Times Square where people from all over the world gathered to watch the annual NDSS Times Square Video. Later, activities of all kinds opened at the Great Hill in Central Park, the scene of the 2013 Flagship Buddy Walk� in New York City.  

  

READ MORE 

  

NDSS Annual Gala & Auction 


SAVE THE DATE!

Thursday, January 23, 2014
The Plaza Hotel
New York, New York

 
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 Margaret Bailey of Camillus, NY on winning the My Great Story of the Month Contest! Margaret's story received the most votes in September 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!


Our Story
By Margaret Bailey, Camillus, NY

It all began May 11, 1987, when Bridget Anne Bailey was born. From that day on a bond began that would last forever. Her first stop, on her way home from the hospital, was to her Great Grammie's house. Gram hugged her, saying "God has a special plan for our little angel." Not knowing the long road Bridget had ahead, we took her home to begin God's plan. 

 


Grace's School is Cool!
By Paula Burckhard, Minot, ND 
 
Each day I drop off Grace in front of her junior high school. I watch as she slowly makes her way through the throngs of students milling about the entrance. And, each day I brace myself for the possibility of her being teased, bullied, looked at with disdain, etc. Always expecting the worst. When will I ever learn? 

  

 READ MORE �                 
Buddy Walk�
Join over 295,000 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
Imagination Movers October Contest

To celebrate Down Syndrome Awareness Month, National Buddy Walk� Partner and Emmy-Award Winning Imagination Movers will be sponsoring a giveaway on the National Buddy Walk�  Facebook page. Twenty random winners will receive a copy of the Imagination Movers' new release, "Back In Blue" and the grand prize winner will receive a one of a kind piece of autographed Mover memorabilia.  

 

The contest will begin on October 1 and will run through October 15.   

 

READ MORE 

  
National Partner Highlight

This month, NDSS is pleased to highlight Signing Time, one of our wonderful National Buddy Walk� Partners.  Rachel Coleman and the Signing Time Foundation are pleased to offer each approved Buddy Walk a $50 credit to use for Signing Time merchandise for a silent auction, raffle, incentive prize or to add to a lending library. For more information about this and other national partner giveaways, email NDSS National Buddy Walk� Director Rebecca Switalski at [email protected]. NDSS thanks Signing Time for their continued support of the National Buddy Walk� Program.   

 


Buddy Walk� Pinterest Board

NDSS is excited about our Buddy Walk� Pinterest board, which features photos and anecdotes from Walks across the country! Check it out and share your photos with [email protected] for a chance to be added. 

 

  

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Advocacy
National Policy Center News

Maryland Governor Martin O'Malley Issues an Executive Order to Establish a Commission for Better Training 

On September 17, Governor Martin O'Malley of Maryland issued an executive order establishing a new commission, the Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities. This Commission will be tasked with evaluating the current training received by people that interact with the disability community and developing and issuing recommendations about the types of statewide training standards the state should adopt to educate individuals in positions of authority-particularly those in public sector positions.  

 

This important Commission will be chaired by Dr. Tim Shriver, Chairman and CEO of Special Olympics. NDSS VP of Advocacy & Affiliate Relations Sara Weir will also serve on the Commission. NDSS and the National Down Syndrome Congress (NDSC) see this as an important step to ensure that the circumstances surrounding Ethan Saylor's tragic death never happen to another person from the Down syndrome community.      

 

On October 17th, NDSS, NDSC, and the Saylor Family will also host a forum entitled the "Frederick Forum on Disability Inclusion" to bring together disability leaders from Frederick County to discuss pressing issues around disability inclusion in the local community. For more information about the forum, please contact NDSS Program Manager Patricia Baker at [email protected].    

 

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Buddy Walk� on Washington Registration Now Open &

Nominate a Champion of Change Advocate!

Registration for the 2014 Buddy Walk� on Washington is now open. The 2014 Buddy Walk� on Washington will be held on Feb. 26-27, 2014 in Washington, DC. The NDSS Buddy Walk� on Washington is an annual two-day advocacy conference that brings the Down syndrome community together to advocate for legislative priorities that impact the lives of people with Down syndrome and their families.
 
NDSS is currently seeking nominations for its 2014 Champion of Change Advocacy awards. As part of the annual NDSS Buddy Walk� on Washington, we honor those in the Down syndrome community who work tirelessly throughout the year as advocates, leaders and change makers for people with Down syndrome. Nominations will be accepted through October 31st.

 

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Achieving a Better Life Experience (ABLE) Act Support Grows in Congress - Do Your Part to Help it Pass
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 46 cosponsors in the Senate and 263 cosponsors in the House. You can do your part to advocate for the ABLE Act through the NDSS Action Alert to urge your members of Congress to cosponsor the ABLE Act!
 

NDSS Thanks Pro Bono Attorney Mark Palchick for his Service to Our Organization 

For the last three months, NDSS was grateful to have Mark Palchick, JD, working alongside our team in Washington, DC. Palchick, a partner at Womble Carlyle, spent his sabbatical from his firm working for NDSS. NDSS is extremely grateful for Mark's service to our organization and benefited greatly from his knowledge, expertise, and experience. Mark was and will continue to be a vital member of the NDSS team.   

 

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Become an NDSS DS-Ambassador Today!

Are you interested in becoming more involved in legislative advocacy? 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.  You can meet some of our NDSS DS-Ambassadors on our dedicated Pinterest board

 

READ MORE  

 

About NDSS
Remembering Dr. Siegfried Pueschel
Dr. Siegfried Pueschel, MD, PhD, JD, MPH was a long-time friend of the Down syndrome community and NDSS, having served most recently on the NDSS Honorary Board of Governors.  Through his roles as physician, author and parent, among many others, Dr. Pueschel will long be remembered for his devotion and contributions to people with Down syndrome and their families. The NDSS Self-Advocate Advisory Board remembers Dr. Pueschel in this tribute. 

 


Straight Talk with Chris Burke

Celebrating Inclusion

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 talks about the importance of inclusion, especially during Down Syndrome Awareness Month.
 

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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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