E-NEWSLETTER May 1, 2014
Featured Story

NDSS Hits the Links at Baltusrol for 18th Annual Golf Outing

The National Down Syndrome Society (NDSS) will hold their 18th Annual Golf Outing on Monday June 16th, at Baltusrol Golf Club in Springfield, New Jersey. This will be the third consecutive year that NDSS will play the course. 


The legendary course has hosted the PGA Tour several times including the US Open on seven different occasions and the PGA Championship in 2005.




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, May 22 at 1:00 PM ET for Down Syndrome Parenting 101: Must-Have Advice for Making Your Life Easier with presenter Natalie Hale.  Natalie will guide us through a quick look at the cradle-to-independent-living book, "Down Syndrome Parenting 101," which won the Best Special Needs Parenting Book of 2012 About.com Reader's Choice Award. Along with highlighting some important "Parent Power Points" for you, Natalie will focus on your send-ahead questions as well as on-the-spot questions. If you can ask it, she'll try to answer it!


Scholar Spotlight

Jonathan Putz


Since 2005, NDSS has provided financial assistance to more than 75 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 2013 O'Neill Tabani Enrichment Fund recipients! Sixteen outstanding students who have Down syndrome were awarded scholarships to help cover the cost of their postsecondary or enrichment courses, including, Jonathan Putz of Brooklyn, NY. Read what Jonathan had to say about going to college. 



Ways to Give
Fundraiser Focus

Molly's 4th Annual Birthday Donation

Molly Dunn is a 12 year old girl from Lawrenceburg, Indiana who celebrates her birthday, February 21, by asking her friends to donate to NDSS instead of buying gifts for her. Every year on her birthday she collects cash and checks and sends them to NDSS. She started this tradition in 2011 after reading Kelle Hampton's blog about her daughter Nella, who has Down syndrome. Molly and her mother discussed what Down syndrome is and talked about her cousin who also has Down syndrome; this is what inspired her to begin supporting NDSS. Molly has raised over $2,000 since they started fundraising through Nella Hampton's fundraising page in 2011.

"I really wanted to donate to NDSS to help make a difference and to let kids my age know what Down syndrome is." -Molly Dunn

Donor Spotlight

1964 Ford Mustang Convertible - Tribute For Troy


Suzanne Drake recalls her panic when she first learned that her son, Troy, had been born with Down syndrome. "I'd never known anyone with Down syndrome so I didn't know what to expect" she says. "I didn't realize the actual capabilities of people with this disorder. What I failed to understand when Troy was born is that Down syndrome is just one small part of who he is. My son is more like everyone else than different."
                                  READ MORE»
National Events
NDSS hosts several national events. 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.
Design Dane's Helmet 
National Down Syndrome Society has partnered with Broaster Chicken, YamaLube Westby Racing and Arai Helmets to bring this unique opportunity 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. 
Accepting applications until July 31, 2014.


NDSS joins Mamie's Mile in One Mile Walk for Down Syndrome
Please join NDSS at the 2014 Mamie's Mile for its annual One Mile Walk for Down Syndrome event on May 17th, 2014 in Washington, D.C.  Mamie's Mile is dedicated to promoting the positive impact and importance of people born with Down syndrome.  If are in the Washington, D.C. area register to join us for a day of family fun with face painting, arts and crafts, games, music and more!


18th Annual NDSS Golf Outing
Please join the NDSS on Monday, June 16, 2014 at Baltusrol Golf Club, Springfield, New Jersey for the NDSS 18th Annual Golf Outing. 
View photos from last year's event here:


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.


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


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 April so she will receive a $50 gift certificate to NYCElectrOnyx.com. Thank you, Shellie, for sharing your story!
The author of the story with the most votes in May will win a gift certificate to Toys R Us. 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!

My Best Friend
By Shellie Weed, Fontanelle, IA

The star of my story is my niece, Jackie Zadina. When we learned of her Down Syndrome, we really didn't know what to expect. We, meaning her family and everyone who loved her, learned that there were some hurdles that Jackie would have to jump and that the things WE so easily took for granted, were huge steps for her. Jackie is now 24 years old and she is one of the best friends that I could have ever asked for. 


                     God Found Me You

By Miranda Gavin, Sioux City, IA
A dear friend gave my son CJ a perfect book entitled God Found Us You. It is one I have already read to him many times and I have a feeling will soon become a much loved on book. While reading the book to CJ tonight as he fell asleep, I was thinking over the multiple times I have shared his adoption story. About the time foster care had been placed on my heart, my dream to adopt a newborn baby with Down syndrome was also placed on my heart.


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
The 2014 Times Square Video Contest is Now Open for Submissions!

On Saturday, September 20, 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!  The contest will run from May 1 - July 10.


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.   A preliminary list of this year's topics include: Mobile Fundraising and the Buddy Walk®,  Recognizing and Encouraging Fundraising Participants with Targeted Email Communications, Self-Advocates and the Buddy Walk®, How to Benchmark your Buddy Walk® for Increased Success, Fundraising and Sponsorships, Teams, Social Media Tips and Tricks, Marketing and PR, Making the Buddy Walk® a Year Round event  as well as some interactive calls to share ideas.  Have another topic you'd like to have covered? Let us know!




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 - Over 430 Members of Congress Agree - #passtheABLEact! 
The Achieving a Better Life Experience (ABLE) Act (H.R. 647/S. 313) continues to gather support in Congress. The ABLE Act has more than 430 cosponsors in Congress with 359 in the House and 71 in the Senate.  Last month, Senate Majority Leader Harry Reid (D-NV) and Senate Minority Leader Mitch McConnell (R-KY) signed on as cosponsors of the ABLE Act highlighting the importance of the legislation and the incredible bipartisan support.  Many of our congressional champions continue to urge House Leadership to bring the bill to the floor for a vote. Stay tuned for further developments. 

NDSS DS-Ambassador Program - 235 Ambassadors and Growing - Join Us Today to Advocate for People with Down Syndrome

NDSS DS-Ambassadors are advocate volunteers who work to build long-lasting relationships with US Senators and US Representatives which are crucial to continually raise awareness, educate and advocate for public policy solutions. Join the NDSS DS-Ambassador program to serve as a liaison between NDSS and your Congressional Delegation to share your story to help benefit the Down syndrome community. We invite interested advocates from across the country to become DS-Ambassadors today! Please contact NDSS Grassroots & Development Manager Ginny Sessions at gsessions@ndss.org




Patti Saylor, mother of Ethan Saylor, to Testify
Before Senate Judiciary Subcommittee on The Constitution, Civil Rights and Human Rights  

Ms. Patti Saylor, mother of Ethan Saylor and Down syndrome advocate, will testify and share her story at a hearing before the Senate Judiciary Subcommittee on The Constitution, Civil Rights and Human Rights, chaired by US Senator Dick Durbin (D-IL), entitled "Law Enforcement Responses to Disabled Americans:  Promising Approaches for Protecting Public Safety" on Tuesday, April 29th. Recent high-profile tragedies, such as the senseless death of Patti Saylor's son, Ethan on January 12, 2013 during an incident with three off-duty sheriff's deputies at his local movie theater in Frederick, Maryland, have demonstrated the need for law enforcement officers to receive additional training to safely address these situations. State and local law enforcement agencies have taken the lead in developing innovative solutions, such as Crisis Intervention Teams. Localities that use these approaches have seen fewer injuries and deaths among officers and people with mental illness or developmental disabilities, increased jail diversion rates, fewer lawsuits following crisis incidents, and stronger ties with the mental health and disability communities.


NDSS Working to Encourage the House Energy & Commerce Committee to Convene a Hearing on the Scientific Links between Down Syndrome and Alzheimer's Disease 


NDSS and other organizations are working to ensure the Department of Health & Human Services (HHS), the National Institutes of Health (NIH), industry, and other key stakeholders are providing appropriate investments in the areas and believe a Congressional hearing in the House Energy & Commerce Committee focused on these intersections would yield significant attention to these important issues for people with Down syndrome and the future of Alzheimer's disease in the United States. Our advocates talked about the scientific links between Down syndrome and Alzheimer's disease, over the Buddy Walk on Washington, and urged Congress to sign onto a letter from our Down Syndrome Champions to the House Energy & Commerce Committee Leadership requesting a hearing on this important issue. 




Straight Talk with Chris Burke

Down Syndrome for the Soul


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 Black History Month and its important message for self-advocates. 

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