E-NEWSLETTER July 1, 2014
Featured Story

NDSS Named Captain Robert P. Taishoff JAGC, USN (ret) as Chairman of the Board 

NDSS announced its new board of directors' leadership positions and named Captain Robert P. Taishoff JAGC, USN (ret) as its new Chairman of the Board. In his vision statement, Taishoff issued the following statement for the future of NDSS. Captain Taishoff and his family established the Taishoff Center for Inclusive Higher Education at the Syracuse University School of Education. Taishoff also serves on the Syracuse University Board of Trustees.  He and his wife, Laurie, have three children including their daughter, Jackie, 12, who has Down syndrome. 

"I am honored to have been selected to serve as the new Chairman of the Board for NDSS.  Ever since joining the Board in 2007, I have been inspired and in awe of the amazing work the staff and advocates have done in support of our nearly 400,000 constituents and their families.  The work of the NDSS has quite simply helped transform society for individuals with Down syndrome and other intellectual disabilities," said NDSS Board Chairman Rob Taishoff. 
Steve Beck was selected at the NDSS Vice Chairman and Gordon Spoor as Treasurer. Tiffany Barfield will continue to serve as Secretary. NDSS also added five new board members: Paul Brunswick, Julie Cevallos, Rick Kosmalski, Dr. Roger Reeves, and Kimberly Templeton. 

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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 for a webinar, Learn How To Pass the Down Syndrome Pro-Information Act in Your State. Date and time are to be determined. This year, both Delaware and Maryland successfully enacted legislation focused on providing accurate, up-to-date, evidenced-based information on Down syndrome to women and families who undergo prenatal testing. Join this webinar to learn from our experienced advocates and NDSS DS-Ambassadors, Rick Kosmalski from Delaware and Heather Sachs from Maryland, on their lessons learned and how they successfully passed legislation in their states. NDSS remains committed to supporting advocates and affiliates to enact this legislation across the country, which builds upon the federal law - the Prenatally and Postnatally Diagnosed Conditions Awareness Act (Public Law 110-374). This law was signed into law by President Bush in October 2008.


This webinar will be held Monday, July 28th, 2014 at 1 pm eastern time.



Scholar Spotlight

Abeo Anwisye, St. Louis, MO- University of Missouri- St. Louis


As an active member of her community, Abeo Anwisye is involved in a number of activities.  She plays four different sports in the Special Olympics, she dances on the dance team, is a member of the High Five club, and recently became an NDSS Ambassador.   After finishing her program at the University of Missouri-St. Louis, she would like to become a pre-school teacher's aide and be able to live on her own.



Ways to Give
Fundraiser Focus

Way to Go Team Jo Jo!

Hallie Levine ran her fourth marathon in Lake Placid, NY on Sunday June 8th in honor of her six year old daughter with Down syndrome, Jo Jo. She also celebrated her birthday that day. In one months' time Hallie, also a NDSS DS-Ambassador became the third highest NDSS Your Way fundraiser in the Compete category, which is NDSS Your Way's most popular category.

Hallie is also writing an essay for Health Magazine about running the marathon and raising money for NDSS. Thank you Hallie and Jo Jo for supporting NDSS.


Donor Spotlight

Thank you to ACE Cash Express for Supporting NDSS during Your Give a Little Campaign


NDSS was extremely honored to be the recipient of a $34,951 donation from Ace Cash Express during the company's Give a Little Campaign last week.  
"The National Down Syndrome Society is an organization that I am very passionate about," said RVP Chris Brooks. "I can't thank our customers and associates enough for their generosity and hard work during this fundraiser."

     READ MORE»    
National Events
NDSS hosts several national events throughout the year. 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' 10th Annual Caring with Congress in Washington, DC
NDSS is excited to host our 10th annual CARING with Congress reception in Washington, D.C. on July 16, 2014 with our special guests Congressman Pete Sessions (R-TX), Congressman Chris Van Hollen (D-MD) and Congresswoman Cathy McMorris Rodgers (R-WA).  CARING with Congress is a NDSS event that raises funds to support our NDSS Research Innovation & Discovery Fund (RIDF).


The goal of the Fund 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 Fund 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.  To learn more about our event and how you can get involved, please visit the NDSS website.  



Design Dane's Helmet 
NDSS has partnered with YamaLube Westby Racing and Broaster Chicken Racing Sponsored Rider Dane Westby to bring a unique opportunity for the Down syndrome community to design the paint scheme for Dane Westby's Arai Corsair-V helmet. The winning design will be painted on the helmet and worn by Dane at the New Jersey Motorsports Park, AMA Pro Race in September 2014. 
Accepting applications until July 31, 2014.


20th Annual NDSS Buddy Walk® in New York City
Help promote acceptance and inclusion of people with Down syndrome by joining us in New York City for the 20th Annual NDSS Buddy Walk®.
Saturday, September 20, 2014
The Great Hill at Central Park, New York, NY
Registration is open and you can sign up


24th Annual NDSS Luncheon

The 24th Annual Luncheon will be held in the fall of 2014. A date and venue for the 2014 NDSS Luncheon have not yet been finalized. 


This special event will once again be presented by Barnes & Noble and will feature the Melissa Riggio Voices Award.


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 Shellie Weed on winning the My Great Story of the Month Contest! Shellie's story about her niece, Jackie, received the most votes in June so she will receive a $50 gift certificate to Cathy's Creations. Thank you, Shellie, for sharing your story!
The author of the story with the most votes in July will win a gift certificate to Ashley By Design. 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 story with the most votes in the My Great Story collection is featured in this section. The votes are reset at the end of each month. 
Featured now are the My Great Stories with the most votes from May and June.


Visit www.ndss.org/stories to check out the campaign and click the submit bookmark to share your story!

Valerie Mazzu
By Michelle Gonzalez, Staten Island, NY

Despite any obstacle Valerie has faced, she continues to exceed any expectation her peers have of her, and together, with the help of her parents, will one day do great things for a great cause. To Lisa, Down syndrome has become a blessing in disguise as she has never felt closer to her daughter. She depicted just how lucky she is to have Valerie in her life when she states "I like being a part of her world. I'm glad she is the way she is. I have never met someone so loving." 


                     My Friend, My Hero

By Katie Boyd-Dias, North Caldwell, NJ
A hero is someone you look up to, does nice things for other people and is courageous. My hero is Grace McDonald. Grace has Down syndrome. Although she has a disability, she is an amazing girl who works past her hardships and strives to make people smile. Grace is my hero because she is courageous, inspiring and helpful.  


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

Last Chance to Submit a Photo for the 2014 Times Square Video Contest!


On Saturday, September 20, 2014 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!   

There are less than two weeks left to submit your photo for a chance to be in the 2014 Times Square Video contest! We invite you to submit a photo for this one-of-a-kind feature presentation. 
 The contest runs until July 10 and winners will be contacted by  July 31.  
2014 Buddy Walk® Webinar Series


The 2014 Buddy Walk® Webinar series is back by popular demand.  The webinar provides you with best practices, innovative ideas and passion of seasoned Buddy Walk® organizers, NDSS staff and National Partners that will help bring your Walk to the next level.  We hope you'll join us in July for the following topics: How to Benchmark your Buddy Walk® for Increased Success and Buddy Walk® and the Media: How to Reach Your Audience through Traditional and Social Media Outlets.  Have another topic you'd like to have covered? Let us know!




National Buddy Walk® Partner News


We are excited to announce four new National Partners for the 2014 Buddy Walk® season: Aardvark Straws, Furnace Hills Coffee, Specs4Us and Strider Bikes. For a complete list of our national partners and their contributions to the Buddy Walk® program, please visit our National Buddy Walk® Partners page or Pinterest board.    




What the Buddy Walk® Means To Me Video


To celebrate the 20th year of the Buddy Walk®, we asked people from all over the world to talk about how the Buddy Walk® impacts their life. We are pleased to share with you their stories.  




2014 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

Achieving a Better Life Experience (ABLE) Act has Reached Historical Support! #passtheABLEact

NDSS continues to advance the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647). There is no other bill before the US Congress with as much bipartisan, bicameral support as the ABLE Act, and NDSS along with more than 100 organizations, continue to push for its passage. To date, we have secured 75 cosponsors in the Senate and 365 cosponsors in the House. Passing this ground-breaking legislation will help people with Down syndrome and other disabilities enhance their quality of life and realize their life aspirations. 


NDSS DS-Ambassador Grows to 250 DS-Ambassadors - Become a NDSS DS-Ambassador Today!  

The two-year anniversary is right around the corner for the NDSS DS-Ambassador Program! Our NDSS DS-Ambassadors are advocate volunteers who have built and continue to build long-lasting relationships with their US Senators and US Representatives to continually raise awareness, educate and advocate for policy solutions that benefit the Down syndrome community.  We invite interested advocates from across the country to become a NDSS DS-Ambassadors today. 


Please contact NDSS Grassroots & Development Manager                                              Ginny Sessions at gsessions@ndss.org





NDSS Joined Ride Sharing Companies, Lyft and Uber, along with other nonprofit organizations at a Congressional Briefing on Transportation Gaps

On June 16, 2014, NDSS participated in a Congressional Briefing entitled Ride Sharing: One Solution Bridging Many Transportation Gaps with Lyft, Uber, the National Federation for the Blind (NFB) and Mothers Against Drunk Driving (MADD).  The briefing focused on the benefits of ride sharing and transportation alternatives. 

NDSS Participates in the National Institute of Health's (NIH) Conference on Mental Health in Intellectual and Developmental Disabilities 

NDSS participated in the National Institute of Health's (NIH) two-day conference on Mental Health in Intellectual and Developmental Disabilities (IDD): Research Challenges and Opportunities in Maryland and was given the opportunity to briefly educate these researchers and leaders in the mental health field of our mission and the importance the focus on mental health to our community as a national organization. The meeting emphasized the significant gaps in treatment available for the IDD population that is disproportionately affected by mental health disorders such as anxiety, depression, and psychosis. The goal of the meeting was to focus on the development of emerging research opportunities by bringing together thought leaders in IDD and treatment of mental health conditions, and to assess progress and barriers since the comparably titled workshop sponsored by the NIH in 2001. NDSS was given the opportunity to educate these researchers and leaders in the mental health field of our mission and the importance the focus on mental health to our community as a national organization. 


NDSS Advocates for Funding to Support the Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID) Program


The Senate Labor-Health & Human Services (L-HHS) Subcommittee just marked up their fiscal year (FY) 2015 appropriations bill and appropriated $12.718 million for the Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID) program, a program that NDSS fully supports. NDSS and other disability organizations continue to urge Congress to support the TPSID program to ensure that thousands of students with intellectual disabilities have meaningful transition options into postsecondary education that leads to academic, career and independent living training, and employment. NDSS feels strongly that students with Down syndrome and other disabilities should have access to postsecondary education, and the resulting employment and independent living opportunities. For more information see our recent Action Alert.




Straight Talk with Chris Burke

It's Summer Time


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 Summer and its important message for self-advocates. 

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