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National Down Syndrome Society E-Newsletter
April 2012
   

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World Down Syndrome Day Recap
On March 21, the global Down syndrome community celebrated the first World Down Syndrome Day as officially recognized by the United Nations. The date, the 21st day of the third month of the year, was chosen to symbolize the third copy of chromosome 21 present in Trisomy 21, the most common form of Down syndrome. NDSS would like to thank all of those who joined us in celebrating people with Down syndrome everywhere!
NDSS Signature 3:21 T-Shirts
Thank you to everyone who purchased an NDSS signature 3:21 t-shirt! We were especially happy to receive so many great 3:21 t-shirt photos. A video collection of these photos aired on our YouTube channel on World Down Syndrome Day.
Click here to watch the 3:21 t-shirt video.
The NDSS signature t-shirts feature 3:21 on the front and the NDSS logo on the back. They are available for men, women and children, and $5 will be donated to NDSS for each one purchased.
Click here to view the collection and purchase a 3:21 t-shirt.
If you'd still like to share your 3:21 t-shirt photos, you can click here to send them to Jordana Stern, NDSS Communications Associate.
United Nations Event
To mark the first officially recognized World Down Syndrome Day, the United Nations held a conference titled "Building Our Future." Several self-advocates spoke as representatives from organizations around the world, including Diana Stolfo, who represented NDSS and delivered the opening remarks. The energy, excitement and inspiration was felt by all in attendance, and Diana received a standing ovation!
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Self-advocate Diana Stolfo receives a standing ovation after delivering her opening remarks at the U.N. on
World Down Syndrome Day.
Photo Credit: Will Schermerhorn
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Diana's words led us by example: "I am living proof that we can all grow and develop no matter how differently-abled we are. Let's put our minds together and build even more independent futures worldwide!"
Click here to read Diana's speech.
Diana also promoted World Down Syndrome Day with Julie Cevallos, NDSS VP of Marketing, on the NBC New York Nightly News.
Click here to view the segment.
Thank you to Diana and all the self-advocates who did so much to raise awareness on World Down Syndrome Day!
Sequenom Celebrates World Down Syndrome Day
NDSS provided Sequenom, a life sciences company focused on diagnostic tests, with materials for World Down Syndrome Day including fact sheets on Down syndrome and art for buttons for their sales force. Sequenom reported that most people did not know it was World Down Syndrome Day, and that opened up an opportunity to talk about our fact sheet! Office personnel shared stories of having been personally touched by individuals with Down syndrome. It was a positive experience for all in raising community and professional awareness.
My Great Story Public Awareness Campaign

The My Great Story public awareness campaign honors the 400,000 Americans with Down syndrome by sharing inspirational stories by and about them. Thank you to those who shared their World Down Syndrome Day stories in the 3/21 section. If you'd like to share your 3/21 celebrations, it's not too late!
Click here to view this issue's Stories of the Month, both of which are part of the 3/21: World Down Syndrome Day section.
Click here to visit the entire 3/21: World Down Syndrome Day section and click the submit bookmark to share your story.
3/21 Blogger Button
 Thank you to all bloggers who decided to Do Something Extra in honor of those with an extra 21st chromosome by adding our new 3/21 blogger button. NDSS is so pleased to work with the blogging community to raise awareness for World Down Syndrome Day and we look forward to future initiatives together. Click here to view a list of those who have already added it. World Down Syndrome Day in the Press NDSS thanks all media outlets, national and local, that did their part in raising awareness on and around World Down Syndrome Day through their available resources. Here are a few of those that did: AOL: You've Got Apostrophe Magazine Huffington Post Lil Sugar Modern Parent NBC New York Nightly News North Jersey: Town Journal Omaha Morning Blend Parents Magazine Pregnancy and Newborn: Baby Buzz Blog We are Central PA World Down Syndrome Day in Social Media Thank you to all who blogged, posted, tweeted, retweeted or otherwise raised awareness for World Down Syndrome Day! NDSS appreciates each and every one of you who join us in promoting the value, acceptance and inclusion of people Down syndrome every day. |
NDSS National Policy Center Update
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Sara Weir Joins the NDSS National Policy Center
Sara Weir joins the NDSS National Policy Center as VP of Advocacy & Affiliate Relations. Weir has been an advocate for people with Down syndrome for over a decade. She will be responsible for implementing the NDSS advocacy program, overseeing the annual Buddy Walk® on Washington and representing NDSS on Capitol Hill. Weir served as a mentor to a young woman with Down syndrome while growing up in Kansas.
Click here to contact Sara Hart Weir, VP of Advocacy & Affiliate Relations.
Buddy Walk on Washington a Huge Success!
The Buddy Walk on Washington continues to generate momentum for the NDSS legislative priorities. The Achieving a Better Life Experience (ABLE) Act (H.R. 3423/S. 1872) continues to grow support in both the House and Senate. Cosponsors have reached 121 in the House and 13 in the Senate, but we still need more.
Click here to view a list of the cosponsors and to email your Representative and two Senators if they have not yet signed on.
The Congressional Down Syndrome Caucus (CDSC) has added 13 new members. The new CDSC Members are: Richard Neal (D-MA), James Moran (D-VA), Jim McGovern (D-MA), Rick Larsen (D-WA), Rick Berg (R-ND), John Carney (D-DE), Lynn Jenkins (R-KS), Steven Rothman (D-NJ), Steve Stivers (R-OH), Scott Rigell (R-VA), Bob Goodlatte (R-VA), Steve Chabot (R-OH),and Bill Cassidy (R-LA).
Click here to find out if your Representative a part of the CDSC. If not, reach out and ask them to join the CDSC!
Many thanks to all the organizations that participate in the National Buddy Walk program. The funding NDSS receives as part of the National Buddy Walk program directly supports the NDSS National Policy Center and the Buddy Walk on Washington.
NDSS Urges the U.S. Department of Health and Human Services (HHS) to Include Down Syndrome in the National Alzheimer's Project Act (NAPA)
NDSS, along with several leading research scientists and clinicians focusing on Down syndrome, is strongly urging the U.S. Department of Health and Human Services (HHS) to include Down syndrome in the National Alzheimer's Project Act (NAPA). The purpose of NAPA is to build upon and leverage HHS programs and other federal efforts to help change the trajectory of Alzheimer's disease and related dementias. NDSS is requesting that Down syndrome be specifically noted not only in the research section of the plan but also in sections related to public awareness, education and care giver support. There is no direct reference to Down syndrome in the current Draft National Plan.
Twenty-Eight States and Washington, D.C. Submit Elementary and Secondary Education Act (ESEA) Flexibility Requests
In September 2011, the U.S. Department of Education (USDOE) announced a program to allow states to waive significant ESEA (formerly known as the No Child Left Behind Act) requirements. In February, the USDOE approved 11 state waiver applications (ESEA Flexibility Requests) and another 26 states and Washington, D.C. submitted ESEA Flexibility Requests for review.
NDSS expressed concern about a number of provisions and omissions in these waiver applications. One concern is the fact that most of these states do not seem to have a well-formed plan for including students who take alternate assessments in their new accountability and teacher evaluation systems and for helping them transition to the new state academic standards referred to as "common core standards" or "college and career ready standards." Another significant concern is that poor performance by students with disabilities will likely result in fewer targeted interventions to improve performance than were required prior to the waivers. On a positive note, ESEA Flexibility Requests do appear to recognize the importance of Universal Design for Learning (UDL).
Click here to see UDL language from the various State Flexibility Requests.
NDSS, along with several members of the Collaboration to Promote Self-Determination (CPSD), met with USDOE officials to discuss the ESEA Flexibility Requests, provided a formal letter outlining our concerns, and submitted recommendations for monitoring.
Click here to read the letter.
Click here to read the recommendations for monitoring.
House Education and Workforce Committee Passes Elementary and Secondary Education Act (ESEA) Reauthorization Bills
On February 28, the House Committee on Education and the Workforce passed two ESEA reauthorization bills introduced by Representative John Kline (R-MN), Chairman of the Committee. These bills are opposed by many civil rights, disability and business organizations, including NDSS.
Representative George Miller (D-CA), Ranking Member of the Committee, offered an amendment during the Committee session. This amendment would have addressed many of the concerns NDSS had with these bills; however, it was defeated in Committee by a 23-16 vote. The Senate Health, Education, Labor and Pensions (HELP) Committee already passed its ESEA reauthorization bill last fall. The next steps are for both the House and Senate to move their bills to a floor vote. Nevertheless, a vote has not been scheduled in either Chamber. A bill is unlikely to pass this year, especially with it being an election year.
Click here to read the NDSS ESEA position paper.
Postsecondary Education Book Released
The story of how and why five of South Carolina's top institutions of higher learning came to provide postsecondary opportunities for students with intellectual disabilities is the focus of a new book, LIFE - Learning Is For Everyone, by South Carolina native Donald Bailey. In this inspiring true story, Bailey provides a first-hand account of this journey. NDSS partnered with Bailey and the College Transition Connection in this successful effort to develop postsecondary opportunities in South Carolina. The book is available on Amazon. All proceeds from sales of the book will go to scholarships for students in South Carolina.
Postsecondary Conference Accepting Presentation Requests
NDSS is pleased to once again sponsor the annual State of the Art Conference on Postsecondary Education and Individuals with Intellectual Disabilities with George Mason University (GMU). The Conference will take place on November 29 - 30, 2012, at the GMU Campus in Fairfax, VA. A call for presentations is now open and may be found on the conference website (www.sscsid.org). Anyone knowledgeable in this field and interested in presenting is encouraged to submit a proposal.
NDSS Serves as Lead Sponsor at the Annual Massachusetts Down Syndrome Congress (MDSC) Conference
 | Laura Noble, Chair, MDSC Legislative Task Force, Madeleine Will, NDSS VP of Public Policy, John Anton, MDSC Advocacy Specialist, Sara Weir, VP of Advocacy & Affiliate Relations
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NDSS was pleased to serve as the lead sponsor at the annual 28th MDSC Conference in Boston, MA on March 17. This year's theme was "Style Down Syndrome." Madeleine Will, NDSS VP of Public Policy, and Sara Weir, NDSS VP of Advocacy & Affiliate Relations, spoke at the Conference on improving advocacy and speaking up for individuals with Down syndrome.
Virginia GAC Elects First Self-Advocate as a Co-Chair and Responds to the Department of Justice VA Institutions Settlement
In October 2011, Virginia became the 15th state to form a statewide NDSS Government Affairs Committee (GAC). The Virginia Down Syndrome Alliance (VDSA) is comprised of representatives from each of the Down syndrome associations in the commonwealth, including Fredericksburg, Greater Richmond, Hampton Roads, Northern Virginia, and Roanoke. Membership among these associations totals more than 1500 families. Frank Stephens of Northern Virginia was elected as a Co-Chair to lead the coalition. Stephens is the first self-advocate in the nation to be a co-chair on a statewide GAC. Michelle Ray of Northern Virginia and Carol Kando-Pineda of Fredericksburg also were elected as Co-Chairs.
In one of its first official actions, the VDSA recently joined with the ARC of Virginia and several regional autism advocacy groups to support the settlement agreement between the U.S. Department of Justice and the Commonwealth of Virginia. The settlement would transform VA's system of care for people with intellectual and developmental disabilities from one that is reliant on large segregated institutions to one that is focused on integrated, community-based services, allowing people with intellectual and developmental disabilities to lead more independent, productive, and self-determined lives.
World Down Syndrome Day on Capitol Hill
On World Down Syndrome Day on March 21, there were celebrations on Capitol Hill in Washington, D.C. too! Representative Cathy McMorris Rodgers (R-WA), Co-Chair of the Congressional Down Syndrome Caucus (CDSC), made remarks on the House Floor in recognition of World Down Syndrome Day and each and every individual with Down syndrome who has made the world a better place just by being part of it. Representative Kevin Yoder (R-KS) also made remarks on the House Floor honoring World Down Syndrome Day and his efforts to support the Achieving Better Life Experience (ABLE) Act.
Click here to view Representative McMorris Rodgers' remarks.
Click here to view Representative Yoder's remarks.
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Sign up to Receive Important Policy Action Alerts
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Be an Advocate!
You can help make a difference in the lives of people with Down syndrome through advocacy! Whether you aren't sure who your local elected representatives are or you are a seasoned advocate, there are many ways for everyone to get involved.
Click here to learn more and to sign up to receive important action alerts from the NDSS National Policy Center.
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Monthly Webinars
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Each month, NDSS provides an educational webinar free of charge to anyone who is interested in learning more about Down syndrome and health, education, research, family life and more. In past months, families, self-advocates, affiliates and others have enjoyed presentations including Helping You Ensure Quality of Life For Loved Ones with Special Needs with Joan Cleveland and Brett Berg of Prudential Life Insurance, ABLE Act 101 - Everything You Need to Know About the ABLE Act with Madeleine Will, and Understanding Nutrition-Related Challenges to Creating Healthy Eating Habits for Individuals with Down Syndrome with Joan Guthrie Medlen.
Click here for more information on past NDSS webinars.
In April, the NDSS webinar will be Prospects for Improving Cognition in People with Down Syndrome. The presentation will be on Thursday, April 19 at 12:00pm ET and will be led by Dr. Omar Khwaja, of Roche, a research-focused healthcare company. The webinar will focus on the neurobiology of cognition in Down syndrome and how pharmaceutical treatments to potentially improve cognition for individuals with Down syndrome are discovered and developed.
Click here to register.
Are there topics you would like to have covered by an NDSS webinar? Click here to email suggestions to Vanessa Quick, NDSS Manager of Education & Programs.
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Buddy Walk® News

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Visit www.buddywalk.org to get involved and be inspired!
2012 Buddy Walk® Season
Attention Walk Organizers: As a reminder, Buddy Walk events must be registered each year with NDSS. If you have already registered your Walk for this year, you do NOT need to register again. If you have not registered your Walk, please do the following:
- Click here to log-in using your user name and password from last year
- Once logged in, click on "Register a 2012 Walk" and complete your Walk registration
- A custom License Agreement will be emailed to you once your registration has been reviewed
If your group is interested in organizing a Buddy Walk for the first time, please click here to get started.
The 2012 Buddy Walk Conference is Almost Here!
The 4th Annual Buddy Walk Conference is approaching quickly and we want to remind you that the deadline to reserve a room at the Boston Seaport is Friday, April 6. To make a reservation, call 877-SEAPORT (877-732-7678) and mention the National Down Syndrome Society. All reservations must be made by April 6 to receive the group rate. We are putting the finishing touches on what will be a day to invigorate, encourage and enrich Walk Organizers from across the country. The conference will take place on Saturday, April 30, from 8:00 am - 4:30 pm. The 2012 Buddy Walk Conference will include the following sessions:
- Best Practices in Engaging the Community in your Buddy Walk Program
- Making the Most of Your Buddy Walk Brand
- Putting the "Special" in Your Special Event
- Making the Most Out of Friends Asking Friends - for non-users of the software
- Sending Emails is Super Easy with Friends Asking Friends - for current users
- Smart Budgeting and In-Kind Donations
- Ask the Experts One-on-One Sessions
- Roundtable Discussions including Sponsorships, Teams, Volunteers, Incentives, Self-Advocate Projects and Public Relations
Click here to view the preliminary conference schedule.
Here is what attendees had to say about past Buddy Walk Conferences: "I love everyone's enthusiasm and knowing that there are so many of us striving to reach the same goals yet we come from all different demographics!" "Having representatives from different groups present their success stories is a crucial part of the sessions. It gives others a chance to see what works, what doesn't work and how other groups achieve success." "What a great meeting of the minds! Thank you so much for your continuous support at the NDSS office!" Click here for more information on the conference. Click here to register for the conference.
If you're not able to attend the Buddy Walk Conference, you can register as a virtual attendee to have access to the conference presentations after the event.
Click here to register as a virtual attendee.
If you have any questions, please click here to email Becky Switalski, NDSS National Buddy Walk Director, or call 877-526-0270.
We look forward to seeing you at the Buddy Walk Conference!
This conference is presented by NDSS and cosponsored by the Massachusetts Down Syndrome Congress.
Share Your Buddy Walk Stories
Do you have a Buddy Walk story you'd like to share? Click here to view the My Great Story Buddy Walk section and click the 'submit' bookmark to add your story!
If you are interested in being a guest blogger for the Buddy Walk blog, please click here to email Becky Switalski, NDSS National Buddy Walk Director.
Stay Connected!
Follow the Buddy Walk on Facebook
Follow the Buddy Walk on Twitter
Follow the Buddy Walk blog
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Upcoming Annual National Events
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Annual Spring Luncheon

Wednesday, June 6, 2012
Location: 583 Park Avenue, New York, NY
Honoring: Jane Lynch, Emmy Award winning actress, comedian and author
Featuring: The Melissa Riggio Voices Award presented to Self-Advocate Diana Stolfo
Click here for a printable invitation
Click here for more information and to register online
16th Annual Golf Outing

Monday, June 18, 2012
Location: Baltusrol Golf Club, Springfield, NJ
Co-chairs: Robert and Meghan Cioffi
Click here for a printable invitation
Click here for more information and to register online
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3/21 Young Leadership Events |
The NDSS Young Leadership Committee joined together to celebrate World Down Syndrome Day on March 21 at Lucky Strike in New York City. More than 125 guests raised $8,500 and had a terrific time.
Click here to view select photos from the NYC Young Leadership Event.
Click here to email Pam Sandonato, NDSS VP of Development, to learn about how to get involved with the NYC Metro Area Young Leadership Committee.
Simultaneously, the 5th Annual Dream BIG Benefit took place at Theory in Chicago. More than 100 guests enjoyed hors d'oeuvres, cocktails, dessert, raffles and prizes. Nearly $15,000 was raised for the O'Neill Tabani Enrichment Fund.
Click here to learn more about the O'Neill Tabani Enrichment Fund.
Click here to visit the Dream BIG website.
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Straight Talk with Chris Burke
NDSS Goodwill Ambassador Chris Burke is best known for his TV role as Corky Thacher on the hit ABC show "Life Goes On" and his recurring role as Taylor, an angel, on the CBS series "Touched by an Angel." As an actor, singer, writer, and dedicated self-advocate, Chris has received numerous awards from local and national organizations for his tireless and inspiring work on behalf of people with disabilities. Chris works in the NDSS New York office, where he is a member of the staff.
The Workplace
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Chris and his co-worker Carson
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It has been 18 years since I have been working for NDSS. I have been working for the organization for a lot of years and I have been doing a lot of challenging jobs. I was Editor-in-Chief of two magazines written for and about people with Down syndrome, News + Views and UpBeat. What an experience for me. It was a joy writing and editing all that matters to me. I have learned a lot. The best part has been working my way up to become the NDSS Goodwill Ambassador. My job is to promote awareness of people with Down syndrome on TV, interviews, public appearances and Buddy Walks®.
As the Office Assistant at NDSS I do a lot of different odd jobs - operating the postage machine, photocopying, putting brochures on shelves, placing UPS orders, packing materials orders, packages and mailing, answering the door for people who are part of UPS and Federal Express, tearing down boxes, emails, burning DVDs, data entry, stuffing envelopes for mass mailings, getting auction items, packing and unpacking for events, shredding, and other office work. What gave me the idea was working at my mom's office. My mom is a retired trade show manager and she gave me my first job as an office assistant, and that paved the way to do different things right here at NDSS.
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Fundraiser Focus
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.
Pure Vida Bracelets®
Pura Vida Bracelets is proud to partner with NDSS in order to help bring awareness to the cause. Last year, the company received hundreds of fan emails asking them to create a charity bracelet for Down syndrome awareness. The bracelet is now available for $5 and Pura Vida donates $1 back to NDSS for each bracelet purchased. The company already sent its first donation to NDSS, thanks to those of you who elected to make a purchase in support of Down syndrome awareness.
In addition, every bracelet sold helps provide full time jobs for local artisans in Costa Rica. Pura Vida is also a member of One Percent for the Planet and donates a portion of its proceeds to the Surfrider Foundation, a grassroots foundation dedicated to cleaning up beaches and oceans around the world.
Click here to learn more about the company and to purchase a Down syndrome awareness bracelet from Pura Vida Bracelets.
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Bloom
by Kelle Hampton
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Kelle Hampton, blogger behind Enjoying the Small Things and mom to Lainey and Nella, will become a published author on April 3 as Bloom: Finding Beauty in the Unexpected hits the shelves. Kelle has elected to contribute a portion of the proceeds from the sales of this memoir to NDSS. Additionally, the Bloom trailer is available on YouTube. William Morrow and Company publishing is donating proceeds from the trailer to NDSS as well. We thank both Kelle and William Morrow for their generosity.
When Kelle Hampton first held her daughter, Nella, and learned that she had Down syndrome, she thought her world was collapsing. Yet as she looked into her new baby's eyes - eyes that begged her for love and acceptance - Kelle's fear and pain were soon vanquished by joy, as she embraced the realization that she had been chosen to experience an extraordinary and special gift.
With lyrical prose and gorgeous full-color photography, Bloom takes readers on a wondrous journey through Nella's first year of life-a gripping, hilarious, and intensely poignant trip of transformation in which Kelle learns that perfection comes in all different shapes. It is a story about embracing life and really living it, of being fearless and accepting difference, of going beyond constricting definitions of beauty, and of the awesome power of perspective. As Kelle writes, "There is us. Our Family. We will embrace this beauty and make something of it. We will hold our precious gift and know that we are lucky."
Click here to view the Bloom trailer.
Click here purchase Bloom.
Click here to visit Kelle's blog, Enjoying the Small Things.
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Scholar Spotlight
Each year, NDSS awards postsecondary scholarships to students with Down syndrome through the O'Neill Tabani Enrichment Fund. In 2011, twelve outstanding students received grants to help cover the cost of their postsecondary or enrichment courses. Recipients of the 2011 O'Neill Tabani Enrichment Fund were invited to write about their experiences as students.
This month's Spotlight is on Danielle Magady of Los Angeles. She shared the following about her college experience:
"My name is Danielle Magady. Last fall I attended my first semester of college. The college I attend is Maalot Los Angeles. It is located right across the street from the elementary school where I work as a teacher's aide, which is very convenient for me. Since I work full time, last semester I took two classes in the evening - Teaching Young Children to Read and Child Growth and Development. I enjoyed them both very much. These classes help me do a better job as a teacher's aide. This semester I am only taking one college class. It's called Sociology of the Family.
I liked the girls in my classes. Many of them were already my friends from high school, but I also made some new friends. I liked studying with them for tests and working on our group project. I have an inclusion coordinator - she used to be my one-on-one aide for five years when I was in middle school and high school - and she and I meet once a week to go over my curriculum and my homework.
When I am not in school or working, I like to stay active. I do zumba dance classes two to three times a week and a gymnastics class once a week. I also belong to a social group that includes young adults both with and without disabilities and we meet once a month or more for fun activities like bowling. I live at home with my parents and two brothers."
NDSS congratulates Danielle on her hard work this semester. She is a terrific role model for other students with Down syndrome who wish to pursue their dreams to enrich their lives through postsecondary education.
Click here to learn more about the O'Neill Tabani Enrichment Fund.
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My Great Story of the Month Contest

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Thank you to all of those who submitted a story to the 3/21: World Down Syndrome Day section of the My Great Story campaign! Each of you will be receiving a prize from NDSS.
This month, we're excited to announce that our My Great Story of the Month Contest is back up and running! In April, the author of the story with the most votes will win a $50 gift certificate to ShoeBuy.com. Share your story and spread the word throughout the month to win this prize!
Click here to share your story.
ShoeBuy has the largest selection of women's, men's and kids' shoes. Choose from over 1,100 brands, 1,000,000 products, the most styles per brand and the most up-to-date fashions. Shopping for shoes at ShoeBuy is risk-free. Plus, enjoy free shipping and free return shipping on U.S. orders.
Click here for more information about ShoeBuy.
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My Great Story: Stories of the Month
This month we are featuring two stories from the 3/21: World Down Syndrome Day section of the My Great Story campaign.
To share your own story, visit www.ndss.org/stories.
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West Teays Elementary Makes A Difference For World Down Syndrome Day
Steve Slack Hurricane, West Virginia
Sophie, my beautiful eight year old daughter, has Down syndrome. She goes to West Teays Elementary in Hurricane, WV. At the beginning of February, I asked if the school could recognize World Down Syndrome Day on March 21. I did not expect the school to do more than a small display.
On the same day I made the request, I received an email from Jana McGinnis, the school's vice principal. It started off with the sentence, "This is a wonderful idea." She said she would like to put up an educational display on the bulletin board in the front hallway of the school. Sophie already had bookmarks to hand out that day. My wife and I agreed that between the display and Sophie passing out the bookmarks, she would have a nice day.
About a week later, Ms. McGinnis contacted me. Since March 21 was on a Wednesday this year, she decided to have the display stay up the whole week and have the morning announcements include facts about Down syndrome. Of course, I was very happy about hearing this and told my wife I could not ask for more.
Soon, I found out that there was much more planned. As it turns out, Ms. McGinnis is very interested in people with special needs. She lives by the motto, "We Are More Alike Than Different." As was explained to me, this was an opportunity to teach the school what all people are capable of accomplishing. What resulted was a week-long celebration of Down syndrome. All the bulletin boards had displays. There were the facts about Down syndrome read to the students in the morning announcements. There was also a school assembly on Monday that included an explanation of Down syndrome, pictures, videos, and a remarkable woman, Missy Mitchell, who was interviewed by Ms. McGinnis. Ms. Mitchell has Down syndrome. She is also a teaching aide, a singer, a purse designer, and a self-advocate. I took off from work to attend the assembly. The feedback from the students was touching.
The next day, the students volunteered to take the pledge to end the derogatory use of the "r-word." On Wednesday, Ms. McGinnis wanted to do something with this year's NDSS theme of doing something extra for World Down Syndrome Day to celebrate those with an extra 21st chromosome. The students could pay $1.00 to post a blue and yellow butterfly on the wall.
On Thursday, there was a door decorating contest. Each classroom's door was decorated to bring awareness about Down syndrome. On Friday the school had a walk-a-thon. Half of the proceeds of the walk-a-thon and the butterflies were scheduled to improve the playground for special needs students, the other half was to go to Down syndrome research. The students raised thousands of dollars. They also raised the spirits of the five children with Down syndrome that are students at the school. After the walk, a balloon was released in honor of each of those students.
My thanks and appreciation goes to Ms. McGinnis, the students, the faculty, and the staff of West Teays.
Awareness & Advocacy for Anders Kara Jones West Fargo, North Dakota
In honor of my son, Anders, age 4, and in honor of World Down Syndrome Day, our family celebrated by doing the following on 3/21:
Anders sported a bright yellow "3:21" NDSS t-shirt at daycare.
I ordered "Taking Down Syndrome to School" and send each of his classmates home with a copy and note explaining the significance of the day.
Our YMCA daycare director posted NDSS posters with facts about Down syndrome at five center sites in our town and she coordinated a fundraising effort to support our local Down syndrome group, "Up With Downs."
Our local news station interviewed the YMCA director, me and even Anders! The story showcases the importance of this day and that kids with Down syndrome are "More Alike than Different!"
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