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E-NEWSLETTER | AUGUST 2013
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NDSS invites you to join us as we debut a new campaign for NDSS Your Way geared towards athletes participating in endurance events between September and November 2013, in and around Down Syndrome Awareness Month. Team NDSS is recruiting 21 athletes of all ages and abilities looking to go the extra mile for Down syndrome, symbolic of the extra copy of the 21st chromosome in trisomy 21, the most common form of the condition. Team NDSS21 is one team of racers that will collectively raise $21,000. Team NDSS21 co-captains are Andrew Lemoncello of Arizona and Tabitha Heit of Pennsylvania. Each is passionate about running and has a child with Down syndrome. They have each committed to raising $1,000 or more for NDSS. This program is open to anyone seeking both a physical and fundraising challenge, while also raising awareness about Down syndrome. Participants for Team NDSS21 are confirmed on a first come basis.
Here's how to join:
- Select and register for an endurance event in your area or elsewhere in the world between September and November 2013
- Visit the Team NDSS21 page and click "Join Our Team"
- Customize a personal NDSS Your Way fundraising page and pledge to raise a minimum of $1,000
- Include your t-shirt/running singlet size during the registration process. You will receive a followup email that includes more specifics about style and customization.
- NDSS will reach out to you through individual and group communications. We will provide you with more information about how to tell and share your story via social media, hashtag your conversations and appeal to the media.
Get started today!
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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 Paige Bouchard of Swansea, MA. Read what Paige 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, August 29 at 1:00 PM ET, please join NDSS for Identifying and Prioritizing Your Families' Needs with Dr. Ann Turnbull, Ed.D. Although a number of family needs assessment tools have been developed, these tools are typically developed without family input and do not cover many tasks for which families are typically responsible. The Family Needs Assessment Tool, which will be the focus of this presentation, was developed through a partnership of researchers and families from the US and five other countries. Using this tool will enable you to identify and prioritize your family's needs to be addressed by your family, your support network and your professional services. It will also enable NDSS to learn members' family priorities as the basis for formulating responsive future goals.
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NDSS Your Way Featured on HooplaHa
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NDSS Your Way was recently featured in a video, HooplaHa, a website meant to inspire, inform, enlighten, engage and above all entertain. The video stars endurance athlete, Richard Peck and his brother, Chris, who has Down syndrome. In three years, Richard has participated in more than a dozen races for Team NDSS, always racing in his NDSS gear and sharing his story along the way. He has offered advice and personal donations to other athletes on Team NDSS, especially those participating in an Ironman race for the first time. Richard and his wife, Anne, have raised more than $13,000 for NDSS in honor of Chris and today, Richard's photos adorn the Compete section of the NDSS Your Way website to provide inspiration and motivation to other advocates for the cause.
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Amber Warren's Crazy Hair for a Cause
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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.
Amber Warren created her NDSS Your Way campaign, Crazy Hair for a Cause, to celebrate and honor her clients and friends who have Down syndrome. Amber has her hair fashioned as a mohawk and she invited donors to cast their votes to help select the color she would dye 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 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 Lisa Schlaack of Laingsburg, MI on winning the My Great Story of the Month Contest! Lisa's story received the most votes in July 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 Lisa Schlaack, Laingsburg, MI
Gently we buckled our tiny blessing into her pale pink car seat, unaffected by the sweltering heat of the August day. She was only one week old, but somehow it felt like months had passed since her birth. Our emotions were mixed as we were visibly elated to be able to bring our first-born child home, yet, I must confess, inwardly we were anxious, fearful and sorrowful. Sorrowful over the news that she was born with Down syndrome and the perceived idea that we had lost something, perhaps a mother's dream or secret ambition. As we began to drive away from the hospital, we were ignorantly unaware of the influence and greatness that lay quietly nestled in our back seat; Gabrielle, our beautiful daughter.
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Why Are You Looking At Me? I Just Have Down Syndrome
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By Lisa Tompkins Riverview, FL
I don't have to tell any of you how special, precious, different or challenging each of our children are. Some of you are just starting and some are well on your way down this journey of daily living with Down syndrome. We all face unique challenges to our specific children; be it health issues, family issues, educational issues, behavioral issues, legal issues or developmental issues. The last thing we need to deal with, is the way society sees and responds to our children based on the way they look, rather than the people they are. My daughter, Lynette, is 23 years old, and has Down syndrome.
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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!
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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 Update
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Thank you to all of those who submitted photos for this year's Times Square Video Contest! Over 1,000 photos were submitted for the contest this year, and our third-party volunteers worked hard to narrow down the amazing selection to over 200 photos for the video. Congratulations to those whose photos were chosen! If you have not heard from us already, NDSS staff will contact the winners by the end of the week. We look forward to reopening the contest next spring.
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Times Square Video Presentation and the New York City Buddy Walk®
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NDSS invites you to join us in Times Square on the morning of the New York City Buddy Walk® on Saturday, September 21. The 2013 Times Square Video will air on the News Corporation Sony screen at One Times Square, located on Broadway between 42nd and 43rd Streets, beginning at 10:00 am and will be replayed at approximately 10:20 am. We hope to see you there!
READ MORE »
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Buddy Walk® Organizer Webinar Series
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All registered Buddy Walk® Organizers are invited to join us on Thursday, August 22 at 1:00 PM ET as social media guru and Chicagoland Buddy Walk® Organizer Jennifer Paganessi shares tips to help you promote your Buddy Walk® using Facebook and other types of social media.
READ MORE »
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Buddy Walk® Promotional Materials
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The NDSS Buddy Walk® staff would like to remind all organizers about the promotional materials available at no charge to approved Buddy Walk® events. If you have not yet requested your Radio PSAs, TV PSAs, posters or NDSS brochures, please email NDSS National Buddy Walk® Director Becky Switalski to take advantage of these opportunities.
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National Policy Center News
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NDSS Launches New Washington, DC Down Syndrome Leadership Network
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On July 10, NDSS launched a new Washington, DC Leadership Network at a kick-off event on Capitol Hill, which was attended by families from the Washington, DC/Virginia/Maryland metro area, attorneys, lobbyists, Congressional staff and many others. NDSS recognized over 20 members of Congress as NDSS Capitol Hill Superheroes. Our goal for the NDSS Down Syndrome DC Leadership Network is to host several events each year in Washington, DC that bring together individuals from the DC area to support our mission to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.
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NDSS Announces Largest Grant to Support the Collaboration to Promote Self-Determination and Madeleine Will as its New Chief Policy Advisor
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NDSS is proud to announce a grant to the Collaboration to Promote Self-Determination (CPSD) to support the public policy goals of the organization and the work of Former NDSS National Policy Center Director Madeleine Will as CPSD's new Chief Policy Advisor. CPSD is an advocacy network of 18 national disability organizations who have come together to bring about a significant modernization of the federal adult system of services and supports for persons with disabilities, particularly those with intellectual and developmental disabilities. Madeleine Will founded CPSD in 2006 along with the National Fragile X Foundation and the Autism Society of America to represent the voice of families and consumers. She will guide CPSD's federal public policy agenda along with CPSD's Executive Director Allison Wohl.
READ MORE »
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NDSS & NDSC Applaud DoJ Investigation into the Tragic Death of Robert Ethan Saylor - More Answers Are Needed
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On July 22, NDSS and the National Down Syndrome Congress (NDSC) issued a press release applauding the US Department of Justice (DoJ) for opening an independent investigation into the tragic and unfortunate death of Robert Ethan Saylor, who had Down syndrome. On January 12, 2013, Ethan Saylor, 26, died while in the custody of Lt. Scott Jewell, Sgt. Rich Rochford, and Deputy First Class James Harris, all deputies of the Frederick County Sheriff's office who were working as security guards at the Westview Promenade Shopping Center in Frederick, Maryland at the time.
NDSS is still encouraging advocates to take action and contact Maryland Governor Martin O'Malley to request that he pursue an independent investigation into the homicide of Ethan Saylor. NDSS and NDSC have also issued a five-page letter to Governor O'Malley demanding he appoint a Special Prosecutor by the Maryland Attorney General's Office to further investigate on several fronts.
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Achieving a Better Life Experience (ABLE) Act Support Flourishes in Congress - Help Do Your Part to Pass the ABLE Act
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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 38 cosponsors in the Senate and 235 cosponsors in the House. 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!
READ MORE »
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NDSS DS-Ambassador Program Celebrates One Year! Join Us and Advocate for People with Down Syndrome
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The NDSS DS-Ambassador program celebrates its one-year anniversary this month. The program has grown to 175 DS-Ambassadors from across the country who advocate for people with Down Syndrome and their families. 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 can learn about some of the NDSS DS-Ambassadors on our dedicated Pinterest board. Please email NDSS Manager of Grassroots & Development Programming Ginny Sessions to become an NDSS DS-Ambassador!
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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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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