E-NEWSLETTER | JULY 2013
Featured Story

Last Chance to Submit a Photo for the 2013 Times Square Video Contest!

On Saturday, September 21, NDSS will kick off Down Syndrome Awareness Month and Buddy Walk® season in the heart of Times Square in New York City with a video presentation featuring more than 200 individuals with Down syndrome from across the country and around the world.

 

There are less than two weeks left to submit your photo for a chance to be in the 2013 Times Square Video contest! We invite you to submit a photo for this one-of-a-kind feature presentation. The contest runs until July 10 and winners will be contacted by July 31. 
      
Resources

Aging and Down Syndrome: A Health & Well-Being Guidebook - Now Available in Spanish


NDSS is pleased to announce the publication of a Spanish-language version of Aging and Down Syndrome: A Health & Well-Being Guidebook. The Spanish version is now available both online and in print, free of charge.  This groundbreaking resource for families and caregivers of adults with Down syndrome covers medical issues commonly encountered in adulthood, as well as how to provide person-centered care.  

 



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 Casey Barker of Midland, GA.  Read what Casey had to say about going to college.

 READ MORE »

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, July 25 at 1:00 PM ET as we present Presuming Competence Every Day in the Classroom: Inclusive Supports for Students with Down Syndrome. During this presentation inclusive education expert Dr. Cheryl Jorgensen, PhD will offer specific examples of inclusive classroom supports, particularly in the area of accessible instructional materials.
 
 
Ways to Give

NDSS Spring Appeal

Last month, we introduced you to the Magnusson Family and shared a letter from a devoted father to his daughter before she enters kindergarten with her typically developing peers this fall. We were moved by Gisli Magnusson's letter and awestruck by Penelope's beauty, and it is obvious that you were too!  

Over 3,500 people liked the post on Facebook, over 300 people shared it and 167 people commented positively about it to date.  Over 72,600 people saw the post thanks to so many of you who shared it with your networks.

In his letter, Gisli wrote, "Penelope, every day I count my blessings because you are in my life. I think of you, and all that you will accomplish, and it gives me strength on my most difficult days." 

Read Gisli's letter to Penelope and support the NDSS appeal by making a donation today.
 

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Join NDSS Your Way!


This summer we have the pleasure of working with NDSS Your Way participants across the country doing all sorts of neat things - from bloggers to runners to golfers to one committed individual who has committed to dye her mohawk for the cause -  we are so excited to share their profiles with you in the coming months in the Fundraiser Focus section below and on the NDSS Your Way Pinterest Board.

 

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!


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Fundraiser Focus

Alan Gard 


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.  

 

On June 24, Alan embarked on the Hundred Hole Hike at Friend Country Club in Friend, NE in honor of his son, Alijah, who has Down syndrome. The Hundred Hole Hike is a national network of golf marathons where participants walk 100 or more holes of golf in one day in service to various worthwhile charitable causes.  

 


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 17th Annual Golf Outing

The 17th NDSS Annual Golf Outing took place on June 17 at Batusrol Golf Club in Springfield, NJ. The event honored Mark A. Victor Pinho, and was attended by New York Knicks Shooting Guard J.R. Smith, WCBS Anchor Chris Wragge, who is also a Media Ambassador for NDSS, Brad Hennefer, who has Down syndrome and founded the Golf for Life Foundation, and Smith's brother, Chris Smith, a member of the 2012 Knicks summer league.  Over $350,000 was donated in support of this sold out event.

Golf Outing Select Photos 

 

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

Times Square Video Information

 

 

  

NDSS Annual Gala & Auction 

Thursday, January 23, 2014

The Plaza Hotel

New York, New York

 

2013 Gala & Auction Select Photos  

  

  

  

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 McKenzie Sexton of Louisville, KY on winning the My Great Story of the Month Contest! McKenzie's story received the most votes in June 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! 
 
 READ MORE »

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!


Live, Love, Laugh
By McKenzie Sexton, Louisville, KY

"Live. Love. Laugh." I never really paid that much attention to this phrase, until my little brother was born. Cole Santiago Quintela was born on 3/11/08, six weeks before his due date. Within a week of his birth, Cole was diagnosed with Down syndrome. When I tell people that, they generally apologize, but he is perfect the way he is - a happy, emotional, loving individual. This little boy taught me the best lesson I could ever learn: "Live. Love. Laugh."

 


My Four-Year-Old!
By Pamela Sargeant, Conshohocken, PA

his story is about my son, Jamir Logan, who is four years old. He was born early and unexpectedly different. His father, James, named him Jamir, which means handsome boy, and yes, the shoe fits. In spite of spending his first nine months of life in the hospital, undergoing surgery after surgery, he always keeps a smile on his face. Jamir melts anyone who crosses his path. His laugh opens your ears and his smile will light up a room. His favorites are music, boxing and ball. It is amazing to watch after being told what he will never do or know when he is in a room filled with people.

  

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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
Buddy Walk® Organizer Webinar: Making the Most of Your Teams and Team Captains

All registered Buddy Walk® Organizers are invited to join us on Tuesday, July 16 at 1:00 PM ET as Abbey Slee, Events Coordinator at the Down Syndrome Association of Central Ohio, leads a webinar titled Making the Most of Your Teams and Team Captains. Learn how to engage, nurture and challenge your Buddy Walk® teams and team captains, and make the most of them by providing them resources for fundraising; communicating important information to them; setting goals for them to work towards; getting them involved before, during and after the Walk; and most importantly, recognizing and thanking them.

 

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National Partner Highlight

This month, NDSS is pleased to highlight BandAbout, one of our wonderful National Buddy Walk® Partners. Established in 2011 by Russell Epstein, BandAbout makes it easy to show your support for people in your life who have Down syndrome. BandAbout provides customizable photo bracelets that can be designed on their website using photos of loved ones as well as text and graphics.

  

To help support each approved Buddy Walk®, BandAbout will create a store for each interested Buddy Walk® that will allow Walk participants to create and purchase custom branded photo bracelets (the bracelets sell for $5 each) with 40% of the proceeds going back to the sponsoring organization. 

 

READ MORE »

  
Advocacy
National Policy Center News

Achieving a Better Life Experience (ABLE) Act Flourishes in Congress: Do Your Part to Help it Pass!

NDSS continues to push for the Achieving a Better Life Experience (ABLE) Act of 2013 (H.R. 647/S.313) to gain more cosponsors and to be passed this year! Currently, it has 37 cosponsors in the Senate and 177 cosponsors in the House. You can do your part to advocate for the ABLE Act through the NDSS Action Alert and urging your members of Congress to cosponsor the ABLE Act!

  

Ethan Saylor Advocacy Update

NDSS continues to advocate for justice for Ethan Saylor and his family. We are still encouraging advocates to contact Governor Martin O'Malley of Maryland to demand an independent investigation from the state. NDSS has also been working with the Saylor family to elevate the unfortunate incident involving Ethan before elected officials and in the media. The Washington Post has published two pieces about Ethan's death,  one by Emma Saylor, Ethan's sister, and an editorial piece about Frederick County's silence .

 

NDSS is also working with The Arc, the US Department of Justice, the Family Resource Information & Education Network for Down Syndrome (F.R.I.E.N.D.S.) of Frederick County, the National Down Syndrome Congress, and Kennedy Krieger Institute to develop a national training platform focused on developmental disabilities. For more information, please contact NDSS VP of Advocacy & Affiliate Relations Sara Weir.

 

Elementary & Secondary Education Act (ESEA) Reauthorization Process Underway in US Congress

The process to update (reauthorize) the Elementary & Secondary Education Act is underway in both the US Senate and US House. ESEA is the law that funds primary and secondary education, emphasizes equal access to education, and establishes high standards and accountability for schools and teachers. Both the Senate and House bills have passed out of Committee, however are very different. It is unclear how the House and Senate would resolve the differences between the two bills. NDSS is urging Congress to work in a bipartisan fashion to reauthorize the ESEA.

 

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Advocate for People with Down Syndrome: Become an NDSS DS-Ambassador Today!

Are you interested in becoming more involved in legislative advocacy? The NDSS DS-Ambassador program is a 50-state initiative that supports our mission to advocate for the value, acceptance and inclusion of people with Down syndrome. NDSS DS-Ambassadors are volunteer advocates committed to taking part in the democratic process and serve as liaisons between NDSS and their respective Congressional Delegations. You learn more about some of our NDSS DS-Ambassadors on the NDSS DS-Ambassador Pinterest board. For more information, please contact NDSS Manager of Grassroots & Development Programming Ginny Sessions. 

  

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About NDSS
Straight Talk with Chris Burke

Independence 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 discusses independence and what it means to him as a self-advocate to value his independent lifestyle. 
 

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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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