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E-NEWSLETTER | NOVEMBER 2012
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Our thoughts and prayers go out to everyone affected by Hurricane Sandy. NDSS headquarters in New York City lost power and we thank you for your patience and understanding as we continue to work remotely. We will do our best to respond to your calls and emails as soon as possible. We are thankful that our website continues to run unaffected, and we encourage you to visit www.ndss.org for Down syndrome-related information and resources. |
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Earlier this year NDSS partner Rhyme & Reason created a signature collection of men's, women's and kids' t-shirts featuring 3:21 on the front, symbolic of the third copy of chromosome 21 in Trisomy 21, and the NDSS logo on the back. More recently we were excited to roll out an expanded line of larger kids sizes and a full range of adult sizes in the yellow and blue kids' design! $5 from each t-shirt purchased will be donated to NDSS.
Outfit your whole family for the holidays!
There are lots of great ways support NDSS while you shop this holiday season. Whether you are buying a gift for a family member, a friend, a teacher, a paraprofessional, a godparent or a neighbor, we have the perfect items for you. Shop NDSS includes business partners who make a donation to NDSS with each purchase. All Shop NDSS partners have pledged their support to the Down syndrome community and work with us to provide quality items at reasonable prices. From gift baskets, to jewelry, to tribute cards, to signature coffee and more, check out all that Shop NDSS has to offer. Thank you for supporting NDSS while making your purchases!
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Since 2005, NDSS has provided financial assistance to young 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! Eleven outstanding students who have Down syndrome were awarded scholarships to help cover the cost of their postsecondary or enrichment courses, including Kayla McKeon of North Syracuse, NY. Read what Kayla had to say about going to college!
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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.
The third annual Richie's Beach Ball Blast in Corpus Christi, TX was held on September 23. All of the proceeds raised in conjunction with this event are donated to NDSS. Since 2010, more than $3,000 has been contributed in honor of Richie Hughes.
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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 guests. Please consider joining us at one of our upcoming events.
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Thursday, January 31, 2013
6:30 - 10:30 PM
Cipriani 42nd Street
110 East 42nd Street
New York, NY
$500 per person; sponsorship packages available
More information coming soon.
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How Did You Celebrate Down Syndrome Awareness Month?
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At NDSS, we had a great time in October celebrating Down Syndrome Awareness Month! Many of you shared your plans with us on Facebook and Twitter and we'd love to hear more. Please check out the My Great Story campaign and share your Down Syndrome Awareness Month celebrations!
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My Great Story of the Month Contest
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Congratulations to Jessica Brantley of West Monroe, LA on winning the My Great Story of the Month Contest! Jessica's story received the most votes in October and she will be receiving a $100 shopping spree at Blue Q.
The author of the story with the most votes in November will win two items from the DC Kids Summer 2013 catalog. 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 Jessica Brantley, West Monroe, LA
I was an RN in the NICU when a little boy was born who was being put up for adoption. I tried finding him a home with two parents. Everyone that we asked had the same reply "If he was normal, I would take him." You see, Noah was born with Down syndrome and a possible heart problem. I wanted to adopt him, but the adoption fees were too high.
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By Maria Polizzi, Copiague, NY
From the moment we were told about your mother's pregnancy we loved you. The day you were born we loved you. We found out that there was a very good chance that you had Down syndrome and we never stopped loving you. My niece Alexandra Mary was born on October 17, 2006 along with her twin Samantha Maria. The entire family was there to welcome the new additions to the family. The aunts, uncles and cousins were so excited. The news that Allie was born with Down syndrome came as a shock to everyone.
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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 find a local Walk in your area!
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Buddy Walk® T-Shirt Design Contest
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2011 Contest Winner, Created by Richie Hollins
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NDSS and the National Buddy Walk® Committee are proud to announce a contest for a new t-shirt design for the 2013 Buddy Walk® season. The selected design will be featured on the t-shirt at the Flagship Buddy Walk® in New York City and will be available to all other Walks in 2013. Designers submitting their artwork can be individuals with Down syndrome, family members or friends. This artist will receive recognition on the NDSS Buddy Walk site for the entire year!
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Buddy Walk® Success Stories
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Photo Credit: Down Syndrome
Association of Tulsa
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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.
- The Down Syndrome Association of Tulsa's 10th annual Buddy Walk® in Tulsa, OK kicked off with a Self-Advocate Ambassador ribbon cutting ceremony. Their Walk is a free event with live music, food, mascots, carnival games, bounce houses and much more. The event has grown from 500 people to 7,500! Even Co-chairs Alana Kennon and Erin Paul never imagined that the event would grow to this magnitude!
- The Down Syndrome Association North Bay Buddy Walk® in Santa Rosa, CA had 475 guests, grossed over $12,000, and enjoyed a full day of laughter, food, walking and talent! The event included an annual talent show featuring individuals with Down syndrome and a special appearance by Mover Scott and Mover Smitty of the Imagination Movers.
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Stay Connected with the Buddy Walk®
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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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Buddy Walk® Organizer Facebook Group
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We are excited to announce that we have started a new group on Facebook for Buddy Walk® organizers. Whether you are a first timer or a seasoned veteran, this group is a place for organizers to ask questions, share ideas, successes and best practices, as well as to provide encouragement to each other. Once you request to join the group we will confirm that you are a Buddy Walk® organizer. We look forward to hearing from you!
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National Policy Center News
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Register Today for the 2013 NDSS Buddy Walk® on Washington
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All are invited to participate in 2013 NDSS Buddy Walk® on Washington, which will be on March 13-14 on Capitol Hill in Washington, DC. The Buddy Walk® on Washington is our annual two-day advocacy conference that unites the Down syndrome community to meet with Congress on Capitol Hill. The 113th Congress will begin soon, so it's important that we present a strong and united front to advocate for legislative priorities that impact the lives of people with Down syndrome and their families.
Whether you are a new or seasoned advocate, we want you to join us and tell your story to the most important policymakers in our country - people who make the important decisions that affect people with Down syndrome. We need self-advocates, parents, affiliate leaders, and other members of the Down syndrome community to make their voices heard in Washington, DC at the Buddy Walk® on Washington.
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NDSS to Host Achieving a Better Life Experience (ABLE) Act Advocacy "Fly-In" this Month
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The US Congress returns to Washington, DC on November 13 following the election for what is called a "lame duck" session. NDSS is hosting an advocacy "fly-in" on November 15 for select leaders from the Down syndrome community to meet personally with senators and representatives on key committees (i.e., Senate Finance Committee and House Ways & Means Committee) in Washington, DC. NDSS is excited to host advocates from California, Illinois, Kentucky, Maryland, Michigan, Montana, Nevada, Ohio, South Carolina, and Virginia to meet with their respective senators and representatives on Capitol Hill to discuss the importance of passing the Achieving a Better Life Experience (ABLE) Act. These advocates will share their personal stories with the most influential senators and representatives to encourage further support for the passage of the ABLE Act.
NDSS will also participate in a press event on Capitol Hill the same day, announcing the largest and strongest support for the ABLE Act ever. The ABLE Act has 38 cosponsors in the Senate and 240 cosponsors in the House to date, which amounts to over 50% of the entire US Congress supporting the bill. For more information, please contact NDSS VP of Advocacy & Affiliate Relations Sara Weir at sweir@ndss.org.
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National Institutes of Health (NIH) Establishes Down Syndrome Patient Registry
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NDSS is excited to announce the first-ever national Down Syndrome Patient Registry through our partnership with the National Institutes of Health (NIH) and leadership role on the NIH Down Syndrome Consortium. The new registry will provide an important resource to individuals with Down syndrome and our families, and link those seeking volunteers for their research studies with those who most stand to benefit from the research.
NDSS has been advocating for the Trisomy 21 Research Resource Act, a bill that would expand and strengthen the research infrastructure for Down syndrome, including the establishment of a Down syndrome patient registry. This is an important accomplishment in furthering research on Down syndrome and NDSS hopes many families will take advantage of the opportunity to sign up as soon as the registry goes online. We will provide information when this opportunity becomes available.
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NDSS Participates in National Governors Association (NGA) Roundtable on Employment
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The Chairman of the National Governors Association (NGA), Governor Jack Markell (D-DE), invited NDSS to participate in a roundtable of advocates for individuals with disabilities in Washington, DC. Governor Markell is in the process of developing a new NGA signature initiative, A Better Bottom Line: Employing People with Disabilities, which is designed to increase employment outcomes for this population of Americans. Over the next year of his tenure as chair of NGA, Governor Markell intends to create a best practice blueprint that states and businesses can use to help employ people with disabilities.
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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 offers advice and perspective to fellow self-advocates. This month, Chris explains why it is important for individuals with disabilities to vote.
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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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