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E-NEWSLETTER | NOVEMBER 2013
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Team NDSS21: Spreading Awareness, Raising Money and Breaking a World Record!
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NDSS thanks and congratulates the members of Team NDSS21 who have collectively raised $45,356 since the team was established in August. A diverse group of athletes of all abilities have spread the mission of NDSS while participating in races that range from 5K to 50K. A special shout-out goes to Tony, an athlete who has Down syndrome and has been racing (3 so far!) with his trainer, Caitlin, in Michigan.
Team NDSS21 Co-captain and Olympic athlete Andrew Lemoncello broke the Guinness World Records™ record for fastest half marathon on a treadmill on October 19th as part of his fundraising campaign, which he dedicated to his four month old daughter, Isla.
Read more about Andrew's grand effort. And check out NDSS Your Way!
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New Resource Section on Aging and Down Syndrome
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Check out the newest section of our website, Aging Matters. The section includes information on medical, emotional and practical issues that affect adults with Down syndrome as they grow older, as well as resources for their caregivers. Also in the section are videos of the presentations that were made at the Age of Change conference on Aging and Down syndrome, which was held in September and sponsored by NDSS and the Down Syndrome Association on Los Angeles.
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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 Patrick Myshrall of Worcester, MA. Read what Patrick had to say about going to college.
READ MORE »
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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 Wednesday, November 20 at 1:00 PM Eastern Time, join NDSS in welcoming nutrition expert Christine Waltermyer for an informative presentation on maximizing your child's potential by feeding them nutrient-dense foods. Discover which foods deliver the most benefit to support your child's wellness. Food affects behavior, mood, mental focus, digestion and immunity. You will learn in this webinar how to seamlessly weave foods into your child's diet that you never dreamed they would eat, and that will support them to be as healthy as possible.
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Join us on #GivingTuesday
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Last year on #GivingTuesday, our donors represented 20 different states, more than 3,000 people liked the NDSS #GivingTuesday posts and 600 people shared them on the NDSS and NDSS Buddy Walk® Facebook pages. Thank you, and let's make this year even better! This year, we'll be tweeting and posting about #GivingTuesday all day on Tuesday, December 3. If you'd like to join us and our Celebrity Ambassadors in the endorsement of NDSS on a worldwide day of giving back, please share our posts and tweet with our handle.
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Richie's Beach Ball Blast
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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.
 For four years, Vivien Sanchez has led a volunteer crew of family, friends and community members in the design and implementation of the Annual Richie's Beach Ball Blast in Corpus Christi, TX benefiting NDSS. This annual event is inspired by Richie Hughes, Vivien's cousin, who lives in San Antonio, TX. A last minute storm forced their beach volleyball tournament indoors, which then became a last minute indoor dodge ball tournament. The eleven volunteers for the event worked feverishly to make all of the changes and more than 100 participants joined in the fun. Everyone loved it!
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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 28th Annual Gala & Auction
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SAVE THE DATE!
Don't miss the chance to support our mission and return to the Jazz Age with our Gala and Auction!
Thursday, January 23, 2014
The Plaza Hotel
Grand Ballroom
770 Fifth Avenue, at 59th Street
New York, New York 10019
HONOREE:
The Today Show with Savannah Guthrie
6:30 PM - 10:30 PM
Festive dress requested; Black Tie optional
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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 Mary Ann Pyron of Sanger, TX on winning the My Great Story of the Month Contest! Margaret's story received the most votes in September 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 Mary Ann Pyron, Sanger, TX
My son Blake Pyron and his best friend Austin Waters suit up every Friday night in Sanger jerseys and lead the team out of the tunnel and onto the field - an honor bestowed on the two friends by their Sanger teammates. Blake and Austin have been Best Friends since they were toddlers. They work the sidelines during games providing the players with water and encouragement and occasionally serve as momentary Indians cheerleaders. And now, thanks to an idea initiated by senior defensive end Dalton Hassell, one of Sanger's four captains, Pryon and Waters are the team's leaders when it comes to running onto the field prior to kickoff.
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By Marcia Rietmann, Sisters, OR
My Daughter, Sara We recently had our daughter, Sara's, senior pictures taken (she is now 18). As her Mom, I was attempting to control every part of this process. What she would wear, that her makeup and hair be just perfect and I was even going to stay with Sara and the photographer while the pictures were being taken. Clearly, she was resisting and being the stubborn gal she can be, so I finally just let go and said to my self: She is 18, this is about her, let her figure it out and then I made a call to a friend to see if I could visit her while Sara and the photographer did their thing...this picture is the result.
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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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2014 Buddy Walk® Conference
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We are excited to announce that registration is open for the 6th Annual Buddy Walk® Conference, which will take place on February 25 and 26 in Washington, DC in conjunction with the Buddy Walk® on Washington and the Down Syndrome Affiliates In Action Leadership Conference! Since the conference began in 2009, we have visited four different regions of the country and, in 2013, held the conference virtually. We are putting the final touches on the schedule of events and encourage you submit topics to include in the breakout sessions.
Email your suggestions to NDSS National Buddy Walk® Director Rebecca Switalski. Interested in being a presenter? Let us know that too!
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Buddy Walk® Success Stories
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 Each Buddy Walk® has its own unique story to tell and leaves indelible memories on its participants. We encourage all organizers to send a Walk photo and anecdote to buddywalk@ndss.org for a chance to be added to the Buddy Walk® Pinterest Board.
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National Policy Center News
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Update on Ethan Saylor Advocacy Efforts & NDSS Participates in First Commission Meeting in Maryland |
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NDSS and the National Down Syndrome Congress (NDSC) continue to actively work on several advocacy efforts around the tragic and senseless death of Ethan Saylor. NDSS VP of Advocacy & Affiliate Relations Sara Weir, who was appointed to serve on the Governor's new Commission, participated in the first Commission meeting on October 28 in Baltimore, MD. Check out an exclusive profile by WUSA 9 on the first Commission meeting.
You can read a thorough updates on several initiatives including the recent Frederick Forum, the civil suit filed by the Saylor family, the new Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities, and our recent training webinar on Law Enforcement, First Responders, and People with Intellectual Disabilities.
READ MORE »
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Buddy Walk® on Washington 2014 - Registration is Open!
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 The NDSS Buddy Walk® on Washington is our annual two-day advocacy conference that brings the Down syndrome community together to advocate for legislative priorities that impact the lives of people with Down syndrome and their families. During the NDSS Buddy Walk® on Washington, advocates meet with members of Congress and their staff on Capitol Hill to advance critical legislative priorities for people with Down syndrome. Registration for the 2014 Buddy Walk® on Washington is now open. We look forward to seeing you in our nation's capital!
READ MORE »
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ABLE Act Support Continues to Grow in Congress!
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NDSS continues to push for the ABLE Act of 2013 (H.R. 647/S.313) to gain more cosponsors and to be passed this year! Currently, we have 46 cosponsors in the Senate and 279 cosponsors in the House. We need your help to continue to advocate for the ABLE Act by urging your members of Congress to cosponsor the ABLE Act by responding to our ABLE Act Action Alert.
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1st NDSS Art Competition Is Underway!
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NDSS launched our 1st Art Competition in October. We are inviting all individuals with Down syndrome to submit their artwork, new or old, in an expression of creativity and originality. Winners will be selected and featured in NDSS Headquarters (New York and Washington, DC), select DC businesses and select Congressional offices. Learn more about submitting your artwork!
READ MORE »
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Do You Want to be an Advocate for People with Down Syndrome - Become an NDSS DS-Ambassador Today!
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 Are you interested in becoming more involved in legislative advocacy? 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 that supports our mission to advocate for the value, acceptance and inclusion of people with Down syndrome. The goal of the DS-Ambassador program is to build long-lasting relationships with US Senators and US Representatives to continue to raise awareness, educate and advocate for public policy solutions that benefit the Down syndrome community. For more information, please contact NDSS Manager of Grassroots & Development Programming or 202-465-3221 about becoming an NDSS DS-Ambassador!
READ MORE »
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Reception & Raffle with Green Bay Packers
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On November 10, NDSS is teaming up with the Green Bay Packers, Packers Linebacker AJ Hawk and Congressman Reid Ribble (R-WI) to celebrate people with Down syndrome in Green Bay, WI. The Packers v. Eagles game is at 12:00 PM Central Time in Green Bay.
Following the game, please join us for a reception along with special guests Congressman Ribble and Linebacker AJ Hawk at 5:30 PM at Black & Tan Grille in Green Bay, WI. You can also purchase a raffle ticket for a chance to win a seat to the Packers' game on November 10 to sit with NDSS President Jon Colman and Congressman Reid Ribble at the game!
READ MORE »
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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 goals "for his life in the coming year as well as Down syndrome advocacy".
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