E-NEWSLETTER | JANUARY 2014
Featured Story

Celebrating 20 Years of the Buddy Walk�!


2014 marks the 20th year of the Buddy Walk� program. We would like to thank all of our affiliates, sponsoring organizations, families and supporters for helping make the Buddy Walk� the premier advocacy event for Down syndrome in the US, as well as the world's most widely recognized public awareness program for the Down syndrome community.

 

We are very excited to commemorate this milestone and look forward to celebrating with you! We invite you to share with us your favorite Buddy Walk� memories and pictures and encourage you to email them to [email protected].  

 

Resources
Scholar Spotlight

Where Are They Now? 

Since 2005, NDSS has provided financial assistance to adults with Down syndrome through the O'Neill Tabani Enrichment Fund. To date, 78 students have received grants to help cover the costs of pursuing their postsecondary education and enrichment goals. Read about what past recipients have to say about their accomplishments, their day-to-day lives as students and recent graduates and their goals for the future!

 

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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 Thursday, January 23, at 1:00PM ET for Your Transition Questions Answered, a presentation and Q&A session on the transition planning process with expert Jo Ann Simons, author of The Down Syndrome Transition Handbook.  

 

 
Ways to Give
Fundraiser Focus

Bobby Tran Ran the Distance

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.  

 

This past October, Bobby Tran joined Team NDSS21, a group of 21 athletes of all ages and abilities who pledged to raise a collective $21,000 in honor of Down Syndrome Awareness Month. While the team has more than doubled its goal with over $48,000 raised to date, Bobby is one of the more successful members, having met his personal goal of $1,000.

 

Bobby ran his first Marine Corps Marathon in 2010 alongside many inspirational runners representing various charities, dedications and disabilities during "The People's Marathon." When his good friends Brian and Val became proud parents to a daughter with Down syndrome the following year, Bobby was eager to help Sophia and her parents. "Seeing the joy she brought while hearing the challenges that she may encounter is what drove me to want to do something, anything, to help her and those with Down syndrome live full, fair and better lives," Bobby said. He ran his second Marine Corps Marathon with Team NDSS21 in Sophia's honor.

 

 
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 28th Annual Gala & Auction 


BUY YOUR TICKETS NOW! 

Don't miss the chance to support our mission and return to the Jazz Age at our 28th Gala and Auction!

Thursday, January 23, 2014
The Plaza Hotel
Grand Ballroom
770 Fifth Avenue, at 59th Street
New York, New York 10019

HONOREE:
The Today Show with Savannah Guthrie

6:30 PM - 10:30 PM
Festive dress requested; Black Tie optional

NEW this year - The Gala Silent Auction will be open to the public one week before the event. Look out for more details! 

 
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 Erik Weiner of Quakertown, PA on winning the My Great Story of the Month Contest! Erik's story received the most votes in December so he will receive a $75 gift certificate to Rhyme & Reason, the company behind the NDSS signature 3:21 line for men, women and kidsNDSS thanks Rhyme & Reason for sponsoring the My Great Story of the Month Contest throughout 2013!
 
The author of the story with the most votes in January will win a $50 Gift Certificate to NYCElectrOnyx. Share your story and spread the word throughout the month to win this great 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!


T21 Club
By Erik Weiner, Quakertown, PA

When Devan was born our life turned down a path we never expected to travel on. We were told early on in the pregnancy that due to her heart defect diagnosed in utero Down syndrome was a possibility, but it was not confirmed until approximately a week after she was born. It was from that point we become card carrying members of the T21 Club. 

 

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My Amazing Angel of a Sister, ToniAnne

By Frank Ambrosio, Howard Beach, NY
 
My sister Toni Anne is 30 years old and has Down syndrome. All my life, I have admired, adored, and cherished my sister Toni Anne. She is an angel and has blessed our family and home with unconditional love and happiness. Toni Anne has helped our family get through the toughest times and roughest hardships we have ever faced. She has taught us how to turn anger into joy, a frown into a smile, crying into laughter. Toni Anne is the center of our lives and any of our family members, at any time, would do anything for her. Toni Anne does not know she has Down syndrome and would probably laugh at us if we had ever tried to explain it to her. 

  

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
2014 Buddy Walk� Conference

Each year, NDSS holds a Buddy Walk� Conference to bring together Walk organizers from across the country to share best practices and learn from each other. The 6th annual Buddy Walk� Conference will be held February 25-26 in Washington, DC, in conjunction with the Buddy Walk on Washington(February 26-27) and the Down Syndrome Affiliates In Action Leadership Conference (February 28-March 2).  We are looking forward to seeing you there!

 

Is there a topic you'd like to see covered? Are you interested in being a presenter?


 

2014 Buddy Walk� Organizers: Registration is Now Open

We are excited to announce that registration for the 2014 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 Wal  k� 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.  

 

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Advocacy
National Policy Center News

Buddy Walk on Washington 2014 - Registration is Open!

Registration for the 2014 NDSS Buddy Walk� on Washington is now open till the end of January! 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. The 2014 Buddy Walk� on Washington will be held on Feb. 26-27, 2014 in Washington, D.C.  Advocates will meet with members of Congress and their staff on Capitol Hill to advance education, research and healthcare for people with Down syndrome.  We look forward to seeing you in our nation's capital in February!

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NDSS Continues to Advance Legislation on Capitol Hill, Including the Achieving a Better Life Experience (ABLE) Act

NDSS continues to advance critical legislation on Capitol Hill on behalf of individuals with Down syndrome and their families. This past year, we worked on the Keeping Students Safe Act, Elementary and Secondary Education Act (ESEA), Workforce Investment Act, Transition toward Excellence, Achievement and Mobility (TEAM Act), and most notably, the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647)

 

NDSS is working to position the ABLE Act to pass in the 113th Congress. To date, we have secured 62 cosponsors in the Senate and 324 cosponsors in the House. There is no other bill before the US Congress with as much bipartisan, bicameral support as the ABLE Act, and NDSS continues to be the driving force behind the push for passage. Passing this landmark legislation will go a long way to help people with Down syndrome and other disabilities enhance their quality of life and realize their life aspirations!

 


NDSS DS-Ambassador Program Grew to 215 Members in 2013 - Join Today!

NDSS DS-Ambassadors are volunteer advocates committed to taking part in the democratic process and serve as liaisons between NDSS and their Congressional Delegations. To date, NDSS DS-Ambassador program has grown to over 215 DS-Ambassadors.

 

NDSS DS-Ambassadors build long-lasting relationships with U.S. Senators and US Representatives to continually raise awareness, educate and advocate for public policy solutions that benefit the Down syndrome community. Each Ambassador's efforts are crucial to the success of NDSS and our legislative efforts in Washington, DC on behalf of the Down syndrome community. Become an NDSS DS-Ambassador to advocate for the Achieving a Better Life Experience (ABLE) Act, research funding and other key NDSS legislative priorities.  
     

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NDSS Cookin' with Congress Raises over $100,000 for NDSS' Research Innovation & Discover Fund (RIDF)

NDSS hosted the 9th annual Cookin' with Congress reception in Washington, DC on December 4 with our special guests Congressman Pete Sessions (R-TX), Congressman Chris Van Hollen (D-MD), and Congresswoman Cathy McMorris Rodgers (R-WA). Cookin' with Congress is an NDSS event that raises funds to support our Research Innovation & Discovery Fund (RIDF). The goal of the RIDF is to improve the health outcomes, increase the quality and access to care and develop new therapies and treatments for all people with Down syndrome. The RIDF supports research and clinical infrastructure needs for the Down syndrome scientific and research community by funding strategic priorities and initiatives that help advance the biomedical research field in Down syndrome. Through corporate sponsors and donations NDSS raised over $100,000 for the Research Innovation & Discovery Fund!   

 

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Straight Talk with Chris Burke

Brothers and Sisters: Learning from Each Other

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 discusses learning from siblings. 

 READ MORE 

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