E-NEWSLETTER September 3, 2014
Featured Story

National Down Syndrome Society Luncheon- Join us October 6th in New York City!

We'd love for you to join us for our annual NDSS Luncheon, presented by Barnes & Noble, in New York City on October 6, 2014! This year, NDSS is proud to honor Senator Kirsten Gillibrand (D-New York), Author of Off the Sidelines: Raise Your Voice, Change the World. This year's Luncheon, which will be held Monday, October 6th at 583 Park Avenue in New York City. You can register for our luncheon by clicking here.

Senator Gillibrand has been a champion of disability and women's rights since joining the Senate back in 2009! NDSS is also excited to recognize Michelle Purri, this year's Melissa Riggio Voices Award winner! 
 

 

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Achieving a Better Life Experience (ABLE) Act

Unanimously Passes the Ways and Means Committee - Next Stop House and Senate Floor Vote! 


 

NDSS continues to work to advance the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647) in the 113th Congress.

 

There is no other bill before the US Congress with as much bipartisan, bicameral support as the ABLE Act. NDSS, along with 100+ organizations, continue to push for its passage early this fall. To date, we have secured 74 cosponsors in the Senate and 380 cosponsors in the House.


On July 23rd, the Senate Finance Committee Subcommittee on Taxation and IRS Oversight convened a Congressional hearing -  The Saving for an Uncertain Future: How the ABLE Act Can Help Individuals with Disabilities and Their Families. NDSS Board Member and Self-Advocate Sara Wolff testified to share her personal story and discuss how the ABLE Act will change her life forever. Check out Sara's testimony here. 


 

The House Ways & Means Committee took it one step further on July 31st, 2014. The Committee

unanimously passed the ABLE Act through its Committee. This markup officially advances the ABLE Act to the House floor for a vote! NDSS feels that passing this legislation will help people with Down syndrome and other disabilities enrich their quality of life and realize their life aspirations.

 

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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, September 24 at 1:00 PM Eastern for a webinar on Project Lifesaver International and the Life Threatening Behavior of Wandering. Project Lifesaver International is a non-profit organization that bridges the technological gap for "at risk" populations and public safety agencies, providing police, fire/rescue and other first responders with a comprehensive program including equipment and training to quickly locate and rescue "at risk" individuals with cognitive disorders who are at constant risk to the life threatening behavior of wandering including those with Alzheimer's disease, Autism, and Down syndrome. In addition, the webinar will also feature NDSS VP of Advocacy & Affiliate Relations Sara Weir who will provide additional background and an update on NDSS' work on federal and state efforts around law enforcement training for with individuals with Down syndrome and other disabilities. 

 

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Scholar Spotlight

Benjamin Krifka, Amherst, Massachusetts

 

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 Benjamin Krifka of Amherst, Massachusetts. Read what Benjamin 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! 

 

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Ways to Give
Fundraiser Focus

The Green T-Shirt for a cause!

Following Mamie's Mile, a one mile walk for Down syndrome in May, Elizabeth Manresa set a goal of raising $50,000 to support NDSS' public policy and advocacy work. Elizabeth and her family started Mamie's Mile to honor her daughter, Mamie Grace, who happened to have Down syndrome and passed away in 2010.

 

To raise awareness, Elizabeth vowed to wear her Mamie's Mile green shirt until her goal was met. From mid-May until end of July, Elizabeth was sporting her green "Mamie's Mile" t-shirt. It only took nearly 90 days to reach her goal and the shirt miraculously held up. NDSS thanks Elizabeth for her dedication and support of NDSS and for helping our organization raise awareness all around the country!


 
"I wore the shirt everyday, everywhere, on every flight, to birthday parties, dinner parties. I think some parents at my children's schools were a little perplexed," said Elizabeth. 

 


Planning for the Future

Simple Ways to Support the NDSS that can also benefit your family

 

If you are looking for ways to support NDSS beyond attending your local Buddy Walk or one of our national events, we can offer some help. There are many ways to help or donate raise money for the Down syndrome community can be mutually beneficial for our organization and for your family. 

 

Setting up gifts in your retirement plans, donating through your IRA or through stock and mutual funds are all ways to help the organization. For more information on making a bequest to NDSS please click the link below.

 

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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.
National Down Syndrome Society Luncheon
 

The National Down Syndrome Society Luncheon will be held on Monday October 6, 2014 at 583 Park Avenue in New York City. 

 

United States Senator, Kirsten Gillibrand (D-NY) will be honored and will feature the Melissa Riggio Voices Award which will be presented to Michelle Purri. The will once again be presented by Barnes & Noble.

 

My Great Story: Story of the Month
Congratulations to Bridget Anderson on winning the My Great Story of the Month Contest! Bridget's story about her cousin, Kyle, received the most votes in June so she will receive a $50 gift certificate to NYCElectrOnyx.com. Thank you, Bridget, for sharing your story!
 
The author of the story with the most votes in September will win a gift certificate to Ashley By Design. Share your story and spread the word throughout the month to win this great prize! 
 
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 is the My Great Story with the most votes from August.

 

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


Cousin Kyle
By Bridget Anderson, Wilbur by the Sea, FL

Family has always been something extra special to me. There is nothing better than getting together with my cousins, aunts and uncles, especially when my cousin, Kyle, is a part of the party. Kyle is a 23-year-old young man with Down syndrome that brings joy to everyone around him and loves nothing more than spending time with his cousins.

 


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!

 


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
Times Square Video Presentation and NYC Buddy Walk�

We invite you to join us on Saturday, September 20 for the 20th annual Flagship Buddy Walk� in New York City.  The morning begins in the heart of Times Square to watch the 2014 NDSS Times Square Video. Immediately following the video, buses will take participants to Central Park for the Buddy Walk�.  Click here to sign up for the bus transportation. Register for the 2014 New York City Buddy Walk�. If you can't join us in person, you will be able to view the 2014 Times Square Video on the NDSS YouTube channel or order your own copy.   


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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�.

 

   

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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

  

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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.     

                                          

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.  

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Buddy Walk Featured on Reading Rainbow Blog

We were honored to recently be asked by Reading Rainbow to write an article for their blog.  The weekly theme was "Buddy Stories" and they 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.

 

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Recognizing 20 Year Buddy Walk� Events

We are pleased to recognize two organizations who have been part of the Buddy Walk� since its inception: the Gold 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.  In this edition, we will highlight the Gold Coast Down Syndrome Organization.

 

Gold Coast Down Syndrome Organization

In 1995, the National Down Syndrome Society came up with the concept of the Buddy Walk� and Terri Harmon, the Executive Director of the Gold Coast Down Syndrome Organization, enthusiastically decided to bring the Walk to Palm Beach County. Their first Buddy Walk� had about 60 people come together to raise awareness and acceptance of individuals with Down syndrome.


 
2014 will mark their 20th Walk, and they are expecting 3,000 people to come to their Buddy Walk�.  Their Walk has always been centered on individuals with Down syndrome and their families and that is still at the heart of their Walk today. The event has been gifted with the interest and backing of businesses, organizations, schools and colleges throughout Palm Beach County. Gold Coast's many programs, opportunities for families to support one another, and their Resource Center all are possible because of the support from their families and their community who have embraced the Buddy Walk�.   One thing that has never changed from GCDSO from their first year to their 20th year and will continue to do is provide a path so all people with Down syndrome can find their way to meaningful lives filled with school, work, relationships and acceptance.


 

Advocacy
National Policy Center News

NDSS CARING with Congress Reception raises over $100,000 for Down syndrome research!
 

NDSS hosted the 10th annual CARING With Congress reception in Washington, DC on July 16, 2014 with our special guests: Congressman Pete Sessions, Congresswoman Cathy McMorris Rodgers, and Congressman Chris Van Hollen. CARING with Congress is a NDSS event that raises funds to support the 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 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 in Down syndrome. Through corporate sponsors and donations NDSS raised over $100,000 for the Research Innovation & Discovery Fund! 

 

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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. 

For more information, contact Ginny Sessions at [email protected]

DS 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.

 

  

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!



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Straight Talk with Chris Burke

End of Summer - New Beginnings 

 

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 Summer and its important message for self-advocates. 


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