Featured Story

Enter Your Photo for the 2013 Times Square Video Contest!

Every year, NDSS reminds the world in a big way about the gifts that people with Down syndrome bring to their communities through a special video presentation on a jumbo screen in the heart of Times Square in New York City.


The Times Square Video presentation kicks off Down Syndrome Awareness Month in October on the morning of the NDSS Flagship Buddy Walk® in New York City. NDSS receives over a thousand photo submissions for the Times Square Video contest. The featured photographs, chosen by third-party volunteers, highlight children, teens and adults with Down syndrome working, playing and learning alongside friends and family. These collective images promote value, acceptance and inclusion, which is the foundation of NDSS and the National Buddy Walk® Program. The 2013 Times Square Video Contest will be open for submissions through July 10.


Dan Piper Award: Nominate a Self-Advocate through June 14!  

The Dan Piper Award was established to commemorate self-advocate Dan Piper's life by celebrating an individual with Down syndrome who, through everyday activities, brings about a greater public awareness and understanding of people with Down syndrome.  By living to his or her fullest, this person is an advocate for themselves and others with Down syndrome.


NDSS is currently seeking nominations through June 14 for the Dan Piper Award, which will be presented on September 21 during the Flagship Buddy Walk® in New York City. 


Scholar Spotlight

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 this year's 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 Christine Rybicki of Randolph, NJ.  Read what Christine had to say about going to college.



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. 

April's webinar was cut short due to technical difficulties so there will be two webinars this month:

On Friday, June 7 at 1:00 PM ET, please join NDSS for an encore presentation of Self-Advocates Speak Out, hosted by the NDSS Self-Advocate Advisory Board.  Members of the NDSS Self-Advocacy Advisory Board will discuss what it means to be a self-advocate, their roles at NDSS and ways to get involved with NDSS programming.

Join NDSS on Thursday, June 27 at 1:00 PM ET as we present Unleash LIFE: Lasting Independence for Everyone with Ryan Platt of A Special Needs Plan. This presentation is focused on understanding the lifetime needs of your child and ensuring those needs are always met. During the webinar, you will learn how to define your future caregiving environment and who will be involved. You will also learn more about the tools that may be necessary including Special Needs Trusts, wills, funding sources, government benefits, tax strategies, guardianship and communication strategies.
Ways to Give

NDSS Spring Appeal

NDSS is proud to share the electronic version of our 2013 spring appeal letter, featuring the Magnusson Family. It is a pleasure for us to continue to get to know families that are joining NDSS on our mission to promote the value, acceptance and inclusion of people with Down syndrome. Thank you to Gisli Magnusson for telling us your story and allowing us to share your letter to your daughter. "Penelope, every day I count my blessings because you are in my life." Gisli writes, "I think of you, and all that you will accomplish, and it gives me strength on my most difficult days."


Read more of Gisli's letter to Penelope and support the spring appeal by making a contribution in honor of someone who inspires you.




NDSS Your Way in May Update

NDSS thanks all of the new fundraisers who joined the NDSS Your Way program last month and congratulations to those who won our weekly drawings! It has been a blast getting to know many of you and we are excited to work with each of you to make your fundraising campaign fun and successful.


It is never too late to join the NDSS Your Way fundraising program. There is no registration fee and no fundraising requirement. We encourage each participant to set a meaningful and attainable goal, and we want you to enjoy the process as you work to reach your goal. Past and current participants remember the moment their campaigns went viral and how it felt when donors from their extended networks showed how much they care.


Here are some quick steps to get your campaign going:


Step 1:  Visit NDSS Your Way and the NDSS Your Way Pinterest Board to learn more and be inspired

Step 2: Email us with your questions or comments

Step 3: Create and customize your page; add photos or logo

Step 4: Share your campaign with your contacts and link to it in your social networks

Step 5: Say thank you and ask again if you have not yet reached your goal


The NDSS Your Way Tips & Ideas page  is also a useful resource for your campaign. We look forward to meeting more motivated individuals through NDSS Your Way!


Shop NDSS for Father's Day 

Shop NDSS has gifts for dads of all types. Rhyme & Reason has a full range of comfortable men's clothing in which 10% of each purchase is donated to NDSS. Our personal favorite is cotton fleece full zip hoodie - it stays soft and doesn't lose its color after several washes. The Rhyme & Reason NDSS signature clothing line also offers great gift options for dad, and $5 from each item in this collection is donated to NDSS.


For the dad who loves gourmet gift baskets and other unique gifts, check out the NDSS store at Giftback, where 10% of your purchase is donated to NDSS.




Fundraiser Focus

Morgan Price 

NDSS is energized by motivated people who contact us about wanting to make a difference in their community and on a national level. Each month, this section features an individual, family or group who has donated time and energy to creating exciting ways to support the value, acceptance and inclusion of people with Down syndrome by raising awareness and money for NDSS.  


Morgan Price is an honors student in the sixth grade at Solomon Plains Elementary School in Plains, Pennsylvania. She joined NDSS Your Way on May 10 and set up her page in memory of her aunt, Joy Ann Landmesser, who had Down syndrome. Morgan set her goal at $500 and surpassed that amount! She has a 10-year-old sister named Abby who has helped her with her fundraiser.



Flagship Events
NDSS hosts several annual events in the New York Metro Area. Our events are growing and we are pleased to welcome people from across the country as our guests. Please consider joining us at one of our upcoming events. 


NDSS Spring Luncheon

At the NDSS Spring Luncheon presented by Barnes & Noble, NDSS honored Hoda Kotb, co-host of the fourth hour of Today; Jordyn Dannenbaum, recipient of the Melissa Riggio Voices Award; and Mikayla's Voice, an organization that develops and supports inclusive programs. Longtime friend of NDSS Deirdre Featherstone served as the Master of Ceremonies and Self-Advocate Samantha Orthey gave the closing remarks. More than $125,000 was donated in support of this event and the memories made that day are priceless. Thank you to all who joined us at this very significant occasion.


Photos from the NDSS Spring Luncheon  

Amateur videos of some of the speeches from the NDSS Spring Luncheon and past events


NDSS 17th Annual Golf Outing

Monday, June 17, 2013
Location: Baltusrol Golf Club, Springfield, NJ
Honoring: Mark A. Victor Pinho
Shotgun Start (Best Ball Format) at 11:00 AM 


This event is sold out!

Golf Outing Website 


NBA Sixth Man of the Year, JR Smith of the New York Knicks, and his younger brother Chris Smith, will be joining us at this outing. They will play in a foursome with Brad Hennefer, a young man with Down syndrome who founded the Golf For Life foundation. NDSS Media Ambassador Chris Wragge, of CBS2 News, will be the fourth player in that group.  


Thank you to everyone who registered for the event. We look forward to seeing you all at Baltusrol!


NDSS 19th Annual Flagship Buddy Walk® in New York City

Saturday, September 21, 2013
Location: The Great Hill at Central Park, New York, NY


Flagship Buddy Walk® in New York City Information

Flagship Buddy Walk® in New York City Registration




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 Education Section

As the school year comes to a close, we want to hear how it went! We would love to hear stories about people of all ages in all types of learning environments. Check out the education section of the My Great Story campaign and share a story and photo about your graduations, academic achievements, sports teams, art clubs, any extra-curricular activities or milestones - anything you are proud of and would like to share!



My Great Story of the Month Contest
Congratulations to Cathy Dvorak of Blaine, MN on winning the My Great Story of the Month Contest! Cathy's story received the most votes in May so she will receive a $75 gift certificate to Rhyme & Reason, the company behind the NDSS signature 3:21 line for men, women and kids!
NDSS thanks Rhyme & Reason for sponsoring the My Great Story of the Month Contest throughout 2013. The author of the story with the most votes each month will win a $75 gift certificate to Rhyme & Reason. For every NDSS signature item purchased, Rhyme & Reason will donate $5 to NDSS. For every regular item purchased, they'll donate 10% of the price to NDSS when National Down Syndrome Society is selected at checkout. Share your story and spread the word throughout the month to win this 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!

You Should Have Named Her "Angel"
By Cathy Dvorak, Blaine, MN

When I became pregnant with our third daughter, although I was of advanced maternal age (36) I had no intention of doing the suggested prenatal testing for Down syndrome. We did have the level two ultrasound, but only so we could get a glimpse of our baby and find out her gender. We were all very excited to welcome her and all testing proved that she was fine, no signs of Down syndrome or any other flags for other abnormalities. At 28 weeks along, my husband and I went on a bike ride and our world was changed forever.


Adopting Neko
By Elizabeth Goulding, San Jose, CA

We knew in our hearts that we wanted to adopt another child with Down syndrome. There was no explanation for this feeling, except love. Our daughter whom we adopted first had so filled our hearts and our lives with joy and love that we could do nothing else, save adopt another child who also had Down syndrome. Waiting is ever so hard, but soon the phone call came.


Buddy Walk®
Join over 285,000 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

New Buddy Walk Public Service Announcements (PSAs)!

We are thrilled to unveil the new Buddy Walk® video PSAs, recorded by National Buddy Walk® Partner the Imagination Movers with members of our affiliate, the Down Syndrome Association of Greater New Orleans. Registered Buddy Walk® events can use the 15, 30 and 60 second versions of the PSA to help promote their local events. 



2013 Buddy Walk® Organizer Conference Recap

On Friday, April 26 and Saturday, April 27, NDSS hosted the fifth National Buddy Walk® Conference, which was held virtually this year. A very special thank you goes out to the wonderful presenters who shared their expertise with us. The Conference was attended by nearly 50 people representing 31 different Buddy Walk® groups from 22 states. Read more for information about the conference, or to register as an attendee to receive recordings of the presentations as well as conference materials.



Buddy Walk® Organizer Webinars

Based on the success of the virtual Buddy Walk® Organizer Conference, we will be holding a series of webinars for registered Walk organizers over the coming months. Our next webinar will be on June 19 at 1:00 PM ET. Buddy Walk® and the Media: How to Reach Your Audience through Traditional and Social Media Outlets will be presented by NDSS VP of Marketing Julie Cevallos and NDSS Communications and Social Media Manager Jordana Stern. Upcoming topics include Making the Most of Your Teams & Team Captains, Social Media Tips and Secrets of a Successful First Time Walk Organizer.




National Policy Center News

Keeping All Students Safe Act Reintroduced in the House

Recently, NDSS signed onto a letter along with 200 other organizations in support of the Keeping All Students Safe Act (HR 1893), which was introduced this month in the House by Representative George Miller (D-CA), Ranking Member, House Education and Workforce Committee, and Representative Gregg Harper (R-MS). This legislation requires each state and local educational agency that receives federal funds to prohibit school personnel, contractors and resource officers from subjecting students to seclusion, mechanical or chemical restraint and aversive behavioral intervention that compromises student health and safety, or physical restraint that is life-threatening based on the student's health or disability status. 

State Updates

Wisconsin Down Syndrome Advocacy Coalition (WDSAC) Established to Advocate for People with Down Syndrome in Wisconsin 

NDSS joined Madison Down Syndrome Society (MADSS), Down Syndrome Association of Wisconsin (DSAW) and Wisconsin Upside Down (WIUSD) at the first Wisconsin Government Affairs Committee (GAC) Leadership Conference in May to collaborate and establish the WDSAC. WDSAC will serve as the coalition to achieve positive systems change for individuals with Down syndrome in the state of Wisconsin. NDSS currently has GACs in 18 states. Read more about the NDSS GAC Program, get involved with your local GAC or start one in your area.


NDSS Joins Forces with Advocates in Texas to Expand Postsecondary Opportunities for Students with Intellectual and Developmental Disabilities

Senator Judith Zaffirini of Texas' 21st Senatorial District and Representative Elliott Naishtat of the 49th District introduced a resolution in the Texas Legislature recognizing the importance of postsecondary education for persons with intellectual and developmental disabilities in attaining a secure and rewarding livelihood. NDSS teamed up with the Down Syndrome Association of Central Texas (DSACT) and the Texas Down syndrome Advocacy Coalition (TDAC) to expand postsecondary education opportunities for students with intellectual disabilities in the state of Texas. This is a model that NDSS is planning to replicate in states across the country through the NDSS GAC Program. TDAC recognized NDSS President Jon Colman with a leadership award for his outstanding service leadership in programmatic and advocacy efforts on behalf of children and adults with Down syndrome and their families in Texas.




About NDSS
Straight Talk with Chris Burke

Happy Father's Day!

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 wishes his dad, and all dads, a happy Father's Day and reflects on the importance of celebrating the day.


NDSS in the Media
NDSS is pleased to work with so many people across the country who help us further our mission of promoting the value, acceptance and inclusion of people with Down syndrome. We thank those who covered NDSS in the media this month. 
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