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E-NEWSLETTER | SEPTEMBER 2013
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Down Syndrome Awareness Month is Almost Here!
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Down Syndrome Awareness Month is coming up in October! At NDSS we are so excited to celebrate. Here are just a few great ways to get involved:
- It's Buddy Walk® season! Most Walks are held in and around October in honor of Down Syndrome Awareness Month. Walk together for Down syndrome!
- Are you inspired by someone with Down syndrome? Share your story with the My Great Story campaign!
- Compete, celebrate or create a unique fundraising campaign with NDSS Your Way!
- Share the many NDSS resources, including our Down syndrome facts, myths & truths and preferred language guide with friends and family, teachers, colleagues and via social media!
- Become an NDSS DS-Ambassador and advocate for people with Down syndrome with members of Congress!
Much more where these came from! For more information and other ideas, check out our Down Syndrome Awareness Month page at ndss.org/DSAM2013.
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"Get to Know Me" Poster and Lesson Plan Now Available!
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Raise awareness about Down syndrome and promote inclusion in your school with the new NDSS poster, accompanying lesson plan and question & answer sheet for students about Down syndrome. The 11x17" poster is perfect for any elementary school classroom, community center, religious organization and more! The lesson plan, for grades K-2 and 3-5, reinforce the inclusive message of the poster.
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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 John Farley of Memphis, TN. Read what John had to say about going to college.
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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.
On Thursday, September 26, from 12:00 PM - 1:30 PM ET, NDSS, the National Down Syndrome Congress (NDSC) and Down Syndrome Affiliates in Action (DSAIA) will co-host a webinar entitled Law Enforcement, First Responders & People with Disabilities. The webinar will cover a training curriculum and methods for how affiliate organization can engage local law enforcement and first responders, and presenters include: Patti Saylor, mother of Ethan Saylor; Sargent A.D. Paul of the Plano Texas Police Department; and David Whalen, Statewide Project Coordinator, First Responder Disability Awareness Training, Niagara University, New York.
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NDSS Signature 3:21 Line - New Colors Available for Down Syndrome Awareness Month!
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NDSS is proud to continue our partnership with Rhyme & Reason, the company behind the NDSS signature clothing line. The line includes men's, women's and kids' designs, each featuring 3:21 on the front, symbolic of the third copy of chromosome 21 in trisomy 21, and the NDSS logo on the back. For each item purchased, $5 is donated to NDSS. For all non-signature items on the site, 10% will be donated NDSS when you enter National Down Syndrome Society at checkout.
Thank you to all who have made the signature line such a success! In response to popular demand, the line has grown to include long sleeve t-shirts and sweatshirts for adults in addition to the original t-shirts, and an expanded line for adults and kids. We are pleased to announce that Rhyme & Reason is offering 30% off of the original adult t-shirts to make way for exciting new colors in all adult designs! The kids design is still available in limited quantity, so get them before they're gone and stay tuned for a new kids' t-shirt coming soon. All orders placed by September 15 are guaranteed to arrive by the start of Down Syndrome Awareness Month on October 1.
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NDSS is bursting with excitement and pride about Team NDSS21, our new NDSS Your Way campaign, which was first announced in the August e-newsletter. The 21-spot roster was filled within one week and within two weeks the team was already one third of the way to their fundraising goal of $21,000. Team NDSS21 has over raised $8,500 to date. Participants on Team NDSS21 represent the following ten states: Alabama, Arizona, California, Colorado, Michigan, Maryland, New Jersey, Pennsylvania, Virginia and Washington.
Follow their progress and cheer them on via NDSS social media using #TeamNDSS21.
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New NDSS Your Way Video Featured on HooplaHa
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Recently, NDSS Your Way was featured in a video on HooplaHa, a website meant to inspire, inform, enlighten, engage, and above all, entertain. NDSS thanks HooplaHa for once again bringing a story of an NDSS Your Way fundraiser to life. Their most recent uplifting video profiles Amber Warren and her Crazy Hair for a Cause fundraiser, which encouraged participants to vote for a crazy color for Amber to dye her mohawk.
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Lulu and the Lettuce Patch
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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.
Greg and Shelley created a blog, written exclusively by Greg, for now, as a place to put their stories about their 17-month-old daughter Lucy, who has Down syndrome. In creating their blog, Greg and Shelly's goal is to relate more than educate. Once they had a platform to publish the stories, they chose the name Lulu and the Lettuce Patch and a logo to go with it, then set up an NDSS Your Way campaign so that people who feel moved by their stories could make donations Lucy's honor.
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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 attendees. Please consider joining us at one of our upcoming events.
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NDSS 19th Annual Flagship Buddy Walk® in New York City
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NDSS Annual Gala & Auction
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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!
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My Great Story of the Month Contest
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Congratulations to Marianne Marts of Tucson, AZ on winning the My Great Story of the Month Contest! Marianne's story received the most votes in August 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!
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My Great Story: Stories of the Month
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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!
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By Marianne Marts, Tucson, AZ
My big brother Joey, I love him more than words can express! He and the Lord have made me who I am today! His love caused me to have a heart of compassion, a desire to help our community and change our world! After having been a special education teacher & professional advocate I brought Joey to live with me after some sketchy issues at his former house. When it didn't work out four months later, I was devastated and racked with guilt. The day we moved Joey into the new group home he was more than ready and said "bye" as if he lived there is whole life, not putting any shame or guilt on me. I cried like a baby as I drove away and stepped back from the "disability" arena feeling a little lost. Seven years later mulling over life and jobs with my hubby I realized my passion was back!
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Hope & Blessings - Reagan's Story
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By Erika Watkins, Brookwood, AL
This is the face of a survivor, this is the face of hope, this is the face of joy, this is the face of encouragement, this is the face of our daughter Reagan. Reagan came into the world on her own time schedule, 3 ˝ weeks early, on Thanksgiving afternoon. She was our turkey that year. Little did we know how she would change our lives and affect the lives of so many. She was two weeks old before we heard the words Down syndrome, our world shattered and reformed in an instant because ultimately the words did not matter, what mattered was this was our little girl, our tiny miracle to love and to raise, we are honored to be her parents.
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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!
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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!
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Times Square Video Presentation and the New York City Buddy Walk®
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We invite you to join us on Saturday, September 21, the morning of the Flagship Buddy Walk® in New York City, to watch the 2013 NDSS Times Square Video on the News Corporation Sony screen at One Times Square, located on Broadway between 42nd and 43rd Streets. The video will begin at 10:00 AM and will be replayed at approximately 10:20 AM. If you can't join us in person, you will be able to view the 2013 Times Square Video on the NDSS YouTube channel or order your own copy.
READ MORE »
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BandAbout Buddy Walk® Custom Photo Bracelets
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Show your Buddy Walk® pride with a custom photo bracelet by National Buddy Walk® Partner BandAbout. Join families and teams across the country in support of the Buddy Walk® by creating a custom bracelet that includes personal photos and text that best represents why you walk. Not feeling creative? You can also choose one of the "ready-to-go bracelets." Each bracelet is $5 and NDSS will receive a donation of $2 for each bracelet purchased.
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Check out and share the Imagination Movers Buddy Walk® public service announcement and find a Buddy Walk® near you all in one place with the Buddy Walk® Spark! Post and share it on Facebook and Twitter, embed it in your organizations' website or your personal blog, email it to your friends and family - let everyone know how great the Buddy Walk® is and how they can find one in their area!
READ MORE »
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National Policy Center News
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NDSS continues to be very involved with the Ethan Saylor incident, the tragic death of a 26-year-old man with Down syndrome in a Maryland movie theater. In August, Delegate Heather Mizeur was the first Maryland lawmaker to speak out and join our call for action. Mizeur, a longtime advocate for people with disabilities, understands as we do that people with Down syndrome and other disabilities deserve to be valued members of welcoming communities. NDSS supported Delegate Mizeur with an interview and op-ed by NDSS Vice President of Advocacy & Affiliate Relations Sara Weir regarding developments in the case and the ongoing push for Governor Martin O'Malley to take action.
NDSS commends the US Department of Justice for opening an investigation into Ethan's death and Delegate Heather Mizeur for joining our call to action. We continue to push Governor O'Malley to appoint a special prosecutor to conduct an independent, unbiased investigation into Ethan's wrongful death. We are still encouraging advocates to contacting Governor O'Malley.
READ MORE »
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2014 Buddy Walk® on Washington - Save the Date!
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The annual NDSS Buddy Walk® on Washington will be on February 26-27, 2014. The Buddy Walk® on Washington is your opportunity to join others from the Down syndrome community to storm Capitol Hill and meet with senators and representatives to advocate for Down syndrome legislative priorities. Stay tuned for more information about registration.
READ MORE »
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Champion of Change Award - Call for Nominations
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NDSS is currently seeking nominations for the 2014 Champion of Change Advocacy awards. Each year, as part of our annual Buddy Walk® on Washington, we honor those in the Down syndrome community who work tirelessly throughout the year as advocates, leaders, and change makers in the area of advocacy for people with Down syndrome.
READ MORE »
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Achieving a Better Life Experience (ABLE) Act Support Continues in Congress
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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, we have 41 cosponsors in the Senate and 253 cosponsors in the House.
This past month, NDSS DS-Ambassadors have been tirelessly advocating by scheduling meetings with their Senators and Representatives to urge them to cosponsor the ABLE Act. NDSS DS-Ambassadors in California met with Senator Dianne Feinstein's (D-CA) State Director Trevor Daley (pictured right) and in Delaware, our DS-Ambassadors met with Senator Tom Carper's (D-DE) State Director to encourage the Senators to cosponsor the ABLE Act.
You can continue to do your part to advocate for the ABLE Act through the NDSS Action Alert by urging your members of Congress to cosponsor the ABLE Act!
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Toys"R"Us Toy Guide for Differently-Abled Kids® is Here!
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NDSS is pleased to once again welcome Toys"R"Us as a corporate partner. The Toys"R"Us Toy Guide for Differently-Abled Kids® is an easy-to-use toy selection resource for those who know, love and shop for children with special needs. This annual, complimentary shopping guide is available now in Toys"R"Us® and Babies"R"Us® stores nationwide and online, in both English and Spanish, at Toysrus.com/DifferentlyAbled. This year's edition features 2012 All-Around Gymnastics Gold Medalist Gabrielle "Gabby" Douglas on the cover, alongside Special Olympics Young Athletes, Isabella Caesar and Samuel Lopez.
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Straight Talk with Chris Burke
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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 his days at school and offers advice on what it takes to learn a lot and be included.
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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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Do you have questions or comments about our
e-newsletter or want more information about NDSS?
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