E-NEWSLETTER
October 1, 2015
Featured Stories

Happy Down Syndrome Awareness Month!
 
October is Down Syndrome Awareness Month (DSAM)!  DSAM is the perfect opportunity to teach those around you about Down syndrome, and there are lots of quick and easy ways to do it! The NDSS YouTube channel has dozens of videos that cover our resources, to advocacy, to the Buddy Walk�, to the My Great Story Video Project and more. With something for everyone, choose a video that speaks to you and present it to your child's class, sports team, youth group or club, or share it with friends, family and colleagues. 


Chris Burke Announces Retirement from NDSS 
 
Chris Burke, best known for his role of Charles "Corky" Thacher on the ABC show "Life Goes On" and who has spent more than the last 20 years on staff with NDSS, will be retiring from the organization in October. Chris has held his role on staff as the Goodwill Ambassador since he started with NDSS in 1994.

"Chris paved the way for people with Down syndrome to follow their own career aspirations," said Sara Hart Weir, President of NDSS. "Chris was a trailblazer for our Down syndrome community, he broke down many of the first barriers to employment for individuals with Down syndrome and was the face of many of our early public awareness campaigns for NDSS and the Down syndrome community."



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 and research. This month's topic is:
 
DS-Connect� - A Resource for the Down Syndrome Community
Thursday, October 22 at 1:00 PM Eastern Time
 
Join NDSS on October 22nd for a webinar featuring representatives from the National Institutes of Health (NIH)'s talking about importance of participating in DS-Connect�. DS-Connect� is a centralized registry resource to better understand the health characteristics and needs of people with Down syndrome. The purpose of DS-Connect� Registry is to store health and other basic information about people with Down syndrome in a secure online format.
 
It is a powerful resource where people with Down syndrome and their families can: 
 
* Take confidential health-related surveys (these surveys are aimed at better understanding of the health of people with Down syndrome across their lifespans)
* Document growth measurements 
* Print out a child's medical history 
* Get access to healthcare guidelines 
* Find out about research that impacts people with Down syndrome 
* Connect with resources about Down syndrome 
* Connect with researchers and health care providers
* Express interest in participating in certain clinical studies on Down syndrome, including studies of new medications and other treatments 

 

Scholar Spotlight

Rion Holcombe - Moore, South Carolina
 

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 the 21 2015 recipients! In 2014, fourteen outstanding students who have Down syndrome were awarded scholarships to help cover the cost of their postsecondary or enrichment courses, including Rion Holcombe of Moore, SC. Read what Rion had to say about going to college.  


Ways to Give
Fundraiser Focus

Robert Wall Will Climb Mount Kilimanjaro in Honor of NDSS


During Down Syndrome Awareness Month, Rob Wall will be embarking on a trek up Mount Kilimanjaro in Tanzania, Africa. At 19,341 feet, Kilimanjaro is the highest mountain in Africa and the highest freestanding mountain in the world. When Rob told his younger brother, Andrew, about the climb he would be making this fall, he was excited, and asked, "Could I come the next time?". Andrew is an impressive young man with Down Syndrome who, at the age of 22, has already exceeded so many of the expectations one might originally have had for someone with his disability. 

Madeline Stuart for EverMaya is Benefiting NDSS


NDSS is proud to be partnering with fashion model, Madeline Stuart, and EverMaya as Stuart launches a new line of handbags. Stuart, the international modeling sensation, will be modeling in this year's New York Fashion Week. Madeline served as our Grand Marshall at our New York City Buddy Walk� on September 19th. Stuart, who is introducing a line of handbags, will be donating 5% of each bad sold to the NDSS. 


Donor Spotlight

 

Thank You to Toys"R"Us and The Children's Fund

 

NDSS is pleased to once again welcome Toys"Я"Us as a corporate partner. Toys"Я"Us, Inc. has a long history of supporting the disability community through the Toys"Я"Us Children's Fund, a public charity affiliated with the company.

Toys"Я"Us has been a generous partner of NDSS for years, sponsoring our Annual Gala & Auction as well as donating to various programs that promote the value, acceptance and inclusion of all people with Down syndrome. 

Toys"Я"Us just released their newest edition of their Toy Guide for Differently-Abled Kids�. The Guide is an easy-to-use toy selection resource that can help parents and caregivers of children with special needs select toys that develop skills through the power of play. All toys featured in the Guide are available at Toys"Я"Us stores nationwide and online at www.toysrus.com, which also offers "flippable" and downloadable digital versions in both English and Spanish.


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 30th Annual Gala & Auction in New York City - March 10, 2016
 
Save the date for NDSS' 30th Annual Gala & Auction, which will be held on March 10, 2016 at B.B. King's Blues Club in New York City. Our Annual Gala & Auction is a celebration of the NDSS mission, the accomplishments of individuals with Down syndrome and those who contribute to the Down syndrome community.  

For more information, please contact NDSS Senior Director of Special Events, Madeline Alemar, at [email protected].

Beau & Friends Concert at Carnegie Hall - March 20, 2016

Join NDSS for a night of Broadway entertainment at the world-renown Carnegie Hall in New York City on March 20, 2016. Headlining the concert will be the dynamic duo Beau Wright, who happens to have Down syndrome, and his father Ben Wright (original Broadway cast of Into the Woods). The night will also include performances by Broadway's elite. 

For more information, please contact NDSS Sr. Director of Special Events, Madeline Alemar, at [email protected].

NDSS Luncheon to Celebrate World Down Syndrome Day - March 22, 2016

To continue World Down Syndrome Day celebrations, join NDSS at our 2016 Luncheon to promote the acceptance and inclusion of people with Down syndrome to the Nation's political, business, education and community leaders who have the impact to be change agents for the Down syndrome community on March 22, 2016 at The National Press Club in Washington, DC. 

For more information, tickets and sponsorship opportunities, please contact NDSS Director of Communications & Outreach, Kristie Hagen, at [email protected].

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

Littlest Warrior
By Michelle Sullivan, Orange, CA

Eli is a gift that keeps on giving. After his surgery I was looking forward to connecting with other moms who have kids with special needs. I also needed to find a way to earn an income and be able to stay at home with Eli so I could take him to his doctor and therapy appointments and the thought of a shirt business to spread awareness and inclusion really sounded great to me! I love that when we wear Littlest Warrior t-shirts, they end up being conversation starters and that's a great way to spread awareness!


Buddy Walk�
Join over 315,000 people at one of over 275 Buddy Walk� events 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 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� Registration


Buddy Walk� events must be registered annually 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 or are interested in organizing a Buddy Walk� for the first time, visit the Steps to Register page to get started.    

For any questions regarding Buddy Walk registration, please email NDSS Director of the National Buddy Walk, Becky Switalski, at [email protected]

Recognizing 20 Year Buddy Walk� Events

We are pleased to recognize the following organizations who have been part of the Buddy Walk� Program for the past 20 years:
 
 
We are honored to have worked with you these past 20 years and look forward to continuing to do so for many years to come!
 

Shop NDSS 

Introducing New Buddy Walk� / Down Syndrome Awareness Nail Wraps!

NDSS is excited to offer these exclusive Buddy Walk� Jamberry Nails wraps.  Each sheet of wraps retails for $25 (price includes tax and shipping) and Jamberry Nails will donate $2.50 per each sheet purchased back to NDSS. Janessa is the mother of two year old daughter with Down syndrome, Kate and is involved with her local Buddy Walk� in Florida.  These Jamberry wraps are a great way to raise awareness for Down syndrome AND the Buddy Walk� and can be used as incentives for team captains, thank you gifts for donors, sold in a Buddy Walk� store or how ever else you can imagine.  

Advocacy
National Advocacy & Policy Center News

Registration for the Buddy Walk � on Washington is OPEN!

Interested in developing your advocacy skills, learning about current legislative issues, networking with other Down syndrome advocates from across the country and meeting with your Members of Congress and their staff?  If the answer is YES to any of the above, join us for our 2016 NDSS Buddy Walk� on Washington, an annual two-day advocacy conference in Washington DC that brings the Down syndrome community together to advocate for legislative priorities that impact the lives of people with Down syndrome and their families.  

This conference will kick-off with advocacy training Monday April 11, 2016, followed by meetings on Capitol Hill with your Members of Congress and their staff on Tuesday April 12. There will be also be time for taking in some of the Washington DC sites (including viewing the beautiful Cherry Blossom trees that should be in bloom that time of year) and socializing with other Down syndrome advocates and NDSS staff.  We hope you can join us for this informative, engaging and empowering conference.  


Congressional Task Force on Down Syndrome: We Want Your Members of Congress to Join!
 
NDSS has been working with Members of Congress on efforts to increase awareness about legislative issues impacting the Down syndrome community. The group in the House of Representatives formerly known as the Congressional Down Syndrome Caucus, has been expanded to include members in the Senate and will be known as the Congressional Down Syndrome Task Force. The bipartisan group led by Senator Jerry Moran (R-KS) and Senator Bob Casey (D-PA) will work with their counterparts in the House of Representatives to ensure the needs of the Down syndrome community are realized in the US Congress. The co-chairs of the Task Force in the House include Congressman Pete Sessions (R-TX), Congresswoman Cathy McMorris Rodgers (R-WA), Delegate Eleanor Holmes Norton (D-DC), Congressman Chris Van Hollen (D-MD), Congressman Ander Crenshaw (R-FL) and Congresswoman Cheri Bustos (D-IL).  Please reach out to your Members of Congress and ask them to join the Congressional Down Syndrome Task Force, or thank them if they have already signed-up. Talking points may be found here.

NDSS was a leader in the national effort to pass the Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act (Public Law No. 113-295, December 19, 2014) and has been leading the initiative to pass state ABLE bills. To date, 32 states have enacted ABLE bills and are in the process of developing ABLE programs. Those states are: Alabama, Arkansas, Colorado, Connecticut, Delaware, Florida, Hawaii, Illinois, Iowa, Kansas, Louisiana (pre-federal and post-federal), Maryland, Massachusetts (pre-federal), Michigan, Minnesota, Missouri, Montana, Nebraska, Nevada, North Carolina, North Dakota, Ohio, Oregon, Rhode Island, Tennessee, Texas, Utah, Vermont, Virginia, Washington, West Virginia and Wisconsin. Additionally, California, Michigan and New York have passed ABLE bills and are awaiting their Governor's signature.  NDSS is committed to achieving the goal of making ABLE accounts available in all 50 states as soon as possible. For more information, see www.ndss.org/stateable.

NDSS is working on many legislative initiatives in the education, employment and health areas. We are actively engaged in the Elementary and Secondary Education Act (ESEA) bills and advocating for and against certain amendments on key issues as the bills go to a Congressional Conference Committee this Fall to reconcile the House bill (Student Success Act, H.R. 5) and Senate bill (Every Child Achieves Act of 2015, S. 1177) versions of ESEA. We hope that the final ESEA Reauthorization bill will contain high standards for students with disabilities, and will strengthen accountability for student achievement, especially subgroups of students.

In the employment arena, NDSS is actively supporting the Transition to Independence Act (S. 1604), which seeks to establish a Medicaid Buy-In Option demonstration program, which would give ten Medicaid Buy-In states an opportunity to receive bonus payments for meeting benchmarks tied to expanding individual integrated employment and reducing subminimum wage work. This bill was recently introduced by Sen. Chuck Grassley (R-Iowa), Sen. Ron Wyden (D-OR) and Sen. Bob Casey (D-PA), and is one piece of a larger employment initiative that will be rolled out by NDSS in the upcoming months. Click here for more information about the Transition to Independence Act.

NDSS has also been advocating for the 21st Century Cures Act (H.R. 6), which passed the U.S. House of Representatives in July and is headed to the Senate this Fall. The 21st Century Cures Act will significantly modernize the process for developing new treatments, diagnostics and tools for effective clinical trials related to people with Down syndrome for improving their quality of life! Click here for more details about this bill and how it can help the Down syndrome community.

As always, we encourage you to sign up to receive NDSS Advocacy Alerts so that you can stay current on important legislative issues and take action to make our collective voices heard. Please sign up here.

How You Can Make a Difference -- Join the Conversation!

  

Follow NDSS on Facebook, Twitter, YouTubeInstagramPinterest 

Subscribe to our NDSS Advocacy Alerts

Attend the Buddy Walk� on Washington 

Help Us Start a State Government Affairs Committee 

Become an NDSS DS-Ambassador 

Donate to NDSS

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