E-NEWSLETTER 
November 4,
 2014
Featured Stories

Achieving a Better Life Experience (ABLE) Act  

is on the Verge of Passing!


As the lame duck session draws near, NDSS remains dedicated to passing the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647) and getting the bill to the President's desk this month. Over 85% of the entire US Congress supports ABLE with 74 cosponsors in the Senate and 381 cosponsors in the House.

 

On September 19, 2014, the US Senate Committee on Finance published a press release outlining a path forward for the ABLE Act by reaching a policy agreement that will serve as the foundation for its passage in November. Passing this landmark legislation will help people with Down syndrome and other disabilities enrich their quality of life and realize their life aspirations!

 

READ MORE�     


National Down Syndrome Society Annual Luncheon


Our NDSS annual Luncheon, sponsored by Barnes & Noble, was held on October 6, 2014 in New York City. 

NDSS was proud to honor Senator Kirsten Gillibrand, author of Off the Sidelines: Raise Your Voice, Change the World along with our 2014 Melissa Riggio Voices Award Winner, Michelle Purri.

Select Photos from the 2014 Luncheon
 

READ MORE�     

 

Resources
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 Wednesday, November 19 at 1:00 PM ET as we present Financial Planning with Heart, a webinar presentation by Simon Rogers, President/CEO of Basildon Financial. During this presentation Mr. Rogers will deliver information on special needs financial planning, answer all your questions, and empower you to make well informed financial choices.  
 

READ MORE


Scholar Spotlight

Cara Stieglitz, Jacksonville, Florida

 

Since 2005, NDSS has provided financial assistance to 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! Fourteen outstanding students who have Down syndrome were awarded scholarships to help cover the cost of their postsecondary or enrichment courses, including Carla Stieglitz of Jacksonville, Florida. Read what Carla had to say about going to college. 

Continuing Education
NDSS to Host State of the Art Conference on Postsecondary Education and Individuals with Intellectual Disabilities

The 2014 State of the Art Conference on Postsecondary Education and Individuals with Intellectual Disabilities is being sponsored by NDSS, George Mason University, other national organizations and federal agencies. This conference provides an opportunity for parents, students, researchers, college faculty, program staff, and representatives of schools and agencies to learn from one another and experts in the field, and gain insight into how to develop and expand high-quality, inclusive postsecondary programs.

 

The conference will be held November 20-21, 2014 at the Hyatt Fairfax at Fair Lakes in Fairfax, VA. We hope to see you there! 

 

Ways to Give
Fundraiser Focus
Jessica Boldy "Bumps Up" Awareness for Down Syndrome

Jessica Boldy hosted a sand volleyball tournament on May 15. 2014 with the goal of raising awareness about Down syndrome. Jessica is part of our top 5 on the NDSS Your Way "create section". Jessica raised $1,677 surpassing her goal by $677. Way to go, Jessica! 

 


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.
National Down Syndrome Society 2015 Gala and Auction - Jan. 29, 2015

We are excited to announce our NDSS Gala and Auction will be held on Thursday, January 29, 2015 at Espace in New York City. 

This year, our honorees are the hit TV show GLEE, Sesame Street and Senator Robert P. Casey Jr. of Pennsylvania.

For event details, registration, and sponsorship information, please visit our 2015 gala website

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
Each month, the story with the most votes in the My Great Story collection is featured in this section. Visit www.ndss.org/stories to check out the campaign and click the submit bookmark to share your story!

Congratulations to Ethan German on winning the My Great Story of the Month Contest! Ethan's story about his cousin, Max, received the most votes in October so he will receive a $50 gift certificate to Cathy's Creations. Thank you, Ethan, for sharing your story!
 
The author of the story with the most votes in November will win a gift certificate to Ashley By Design. Share your story and spread the word throughout the month to win this great prize! 
 

A Person Who Changed My Life is My Cousin Max
By Ethan German, Oakes, ND

A person who has changed my life is my cousin Max. He likes to play with me all the time. He loves me like a cat loves a soft blanket. Max makes me happy because he likes everyone and enjoys being friends with me. We are two really good cousins. He likes to play with me. We enjoy playing with PlayDoh which is very fun. Max likes to play sports and watch the NDSU Bison. Mighty Max likes to watch me play sports, which makes me very happy. 
 
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

 

2015 Buddy Walk� Conference


Plans are underway for the 7th annual National Buddy Walk� Conference, which will be held on April 13 and 14 in Washington, DC. Each year, NDSS holds a Buddy Walk� Conference to enable walk organizers from across the country to share best practices and learn from each other, NDSS staff and to learn about our National Partners.

 

Is there a topic you'd like to see covered? Are you interested in being a presenter? Email NDSS National Buddy Walk� Director Rebecca Switalski at [email protected].    

                            

Buddy Walk� Stories


Each Buddy Walk� has its own unique story to tell and leaves indelible memories on its participants. We encourage everyone to send a Walk photo and anecdote to [email protected] for a chance to be added to the Buddy Walk� Pinterest Board. 

 

 

 

Imagination Movers PledgeMusic Campaign Benefits NDSS and the Buddy Walk�

National Partners the Imagination Movers recently started a PledgeMusic campaign to raise money for their upcoming 9th album, a CD/DVD combination.  The Movers have named NDSS as their charity of choice and will be donating 3% of their goal and 6% monies raised post goal to the Buddy Walk�.  They are offering very cool exclusives (including videos and music downloads) for pledgers, so we encourage you to check it out and pre-order a CD/DVD (it can even be autographed to your little one or their teacher!)  We appreciate their continued support of the Buddy Walk� and look forward collaborating with them on a Down Syndrome Awareness PSA they will film when they return from their Canadian Tour later this fall.  

READ MORE

Introducing New Buddy Walk� and Down Syndrome Awareness Items

NDSS is pleased to partner with Furnace Hills Coffee to bring you our Buddy Walk� blend and Buddy Walk� Decaf Roast coffees. The coffee is roasted in the Furnace Hills of Maryland by their chief roaster, Erin Baldwin, who happens to have Down syndrome.

Six dollars from each bag (sold for $14 a bag) will be donated to NDSS or the sponsoring Buddy Walk�.

   

READ MORE

 

Down Syndrome Awareness Straws By Aardvark

NDSS has partnered with Aardvark Straws to create Down syndrome awareness paper straws as part of their "Straws For A Cause" line. These straws would make gifts for team captains or participants, incentive prizes, items to sell at Buddy Walk� events or even for use at picnics or to celebrate Down Syndrome Awareness in the classroom.


These paper straws are 100% made in the USA with a US labor force including those with disabilities.

 

The straws are available through local Buddy Walk� events as well as the National Down Syndrome Society.You can purchase your Down syndrome awareness straws here

  

READ MORE

Buddy Walk� Featured on Reading Rainbow Blog

NDSS was honored to author a blog for Reading Rainbow to write an article for their blog. The weekly theme was "Buddy Stories" and Reading Rainbow felt it would be important to talk about the importance of friendship and the role of "buddies" for the Down syndrome community.  We were thrilled to have the opportunity to share with a wider audience the mission of the Buddy Walk�: the acceptance and inclusion of people with Down syndrome - and to highlight touching stories of friendship showing this in action.

 

READ MORE

Recognizing 20 Year Buddy Walk� Events

We are pleased to recognize three organizations who have been part of the Buddy Walk� since its inception: the Down Syndrome Society of Rhode IslandGold Coast Down Syndrome Organization and the Down Syndrome Association of Los Angeles.  We are honored to have worked with you since the beginning and look forward to continuing to do so for many years to come!


 

Advocacy
National Policy Center News

 

2015 Champion of Change Advocacy Awards - Nominate Today!


NDSS is currently seeking nominations for our 2015 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 in the area of advocacy for people with Down syndrome. Each year NDSS honors a self-advocate, an individual leader, an NDSS DS-Ambassador and a local Buddy Walk�. NDSS is currently requesting nominations for our 2015 awards through November 30, 2014. Submit a nomination today!

 

READ MORE�  

 

NDSS Government Affairs Committee (GAC) Program - Start One in Your State Today


The aim of the NDSS Government Affairs Committee (GAC) program is to help Down syndrome support organizations, parents and self-advocates across states to join forces with NDSS to achieve positive systems change for individuals with Down syndrome and other intellectual disabilities at state and local levels of government. GACs work in collaboration with NDSS to promote and pass state legislation to influence regulation and other important policy. NDSS is focused on creating statewide government affairs committees united in their determination to work on key policy objectives across the lifespan of individuals with Down syndrome and other intellectual disabilities. Start a GAC in your state today!

Join NDSS' DS-Ambassador Program and Become an Advocate for People with Down Syndrome!


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.  NDSS DS-Ambassadors are critical to our advocacy success, furthering of NDSS legislative agenda and mission of being the national advocate for value, acceptance and inclusion of people with Down syndrome.  We invite and encourage all interested advocates from across the country to become a NDSS DS-Ambassadors today!

 


NDSS Advocacy Alerts - Keep Updated with NDSS' Legislative Agenda


T
hrough advocacy alert emails, NDSS will let you know what you can do and when to support important Down syndrome legislative activities. Our action alerts enable all advocates alike to get involved and make a difference in the lives of people with Down syndrome. A quick phone call and/or submitting an email is usually all it takes to affect positive changes for people with Down syndrome.

 

SIGN UP TODAY


NDSS 50-State Organ Transplant Campaign

 
People with physical and intellectual disabilities face discrimination on organ transplant lists.  Despite federal protection, people with disabilities still do not receive equal consideration for organ transplants. Because of lack of federal enforcement, there is a demonstrated need for state action to ensure the rights of people with disabilities, including Down syndrome.  Currently, two states (New Jersey & California) have laws in place that prohibit this discrimination. NDSS is in the process of launching a 50-state campaign to enact legislation that prohibits discrimination against individuals with Down syndrome and other development disabilities from being consider on state organ transplant lists. If you are interested in getting involved in our state advocacy efforts, please contact Ginny Sessions at [email protected]

Down Syndrome Pro-Information Bills

The Prenatally & Postnatally Diagnosed Condition Act was enacted into federal law to increase the readiness of accurate, up-to-date, and balanced information about Down syndrome to women and families considering prenatal testing, and several states have recently followed suit and passed a similar state laws.  NDSS works with states to advocate for legislation and provides our NDSS prenatal testing information state model legislation toolkit.  The goal of this toolkit is to help states enact legislation to promote accurate, up-to-date information, evidenced-based information on Down syndrome and prenatal testing.  This year, NDSS worked with Delaware, Maryland, Louisiana to successfully enacted legislation focused on providing accurate, up-to-date, evidenced-based information on Down syndrome to women and families who undergo prenatal testing. NDSS remains committed to supporting advocates and affiliates to enact this legislation across the country, which builds upon the federal law.

 

READ MORE  

NDSS Affiliate Highlight

 

The Arc of North Central Virginia 

 

NDSS is pleased to highlight the work of The Arc of North Central Virginia for their efforts to raise awareness about Down syndrome in the state of Virginia, and help support individuals with intellectual disabilities! The Arc of NCV is now collecting pre-paid applications for a Virginia Down Syndrome Awareness license plate! The Arc of NCV must collect 450 pre-paid applications by the end of 2014. In January 2015, Delegate Michael Webert (18th district) will submit legislation for approval to the General Assembly. Once approved, the plate will become law on July 1, 2015 and plate production will begin!

 

If you are interested in supporting this effort and obtaining a beautiful new license plate to raise Down Syndrome Awareness, then just visit the website below to download and print the application.  Complete your application today.

 

Straight Talk with Chris Burke

Giving Thanks for 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. On July 24th, OWN (The Oprah Winfrey Network) featured Chris on an episode of "Where Are They Now." If you missed the piece when it aired, check it out here

In this monthly column, Chris talks about the importance of inclusion. 


Do you have questions or comments about our
e-newsletter or want more information about NDSS?