National Down Syndrome Society E-Newsletter


February 2012 


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My Great Story: World Down Syndrome Day Section!     


How are you celebrating World Down Syndrome Day?


World Down Syndrome Day is coming up next month on March 21! This date, the 21st day of the third month of the year, symbolizes a third copy of chromosome 21 that characterizes Down syndrome. While this is the seventh year that World Down Syndrome Day will be celebrated, this year is especially significant as it is the first time that the day will be officially observed by the United Nations. 


NDSS invites you to join us in the global celebration! Click here for some great ideas and ways to get involved.


We want to hear your plans!


The My Great Story public awareness campaign honors the 400,000 Americans with Down syndrome by sharing inspirational stories by and about them. All are invited to share their World Down Syndrome Day stories in the new 3/21 section. 


Click here to visit the My Great Story campaign site and click the submit bookmark to share your story.


NDSS National Policy Center Update

See You at the Buddy Walk® on Washington!

The annual NDSS Buddy Walk® on Washington (February 29 - March 1) is just a few weeks away. We currently have over 250 advocates signed up! For those advocates attending this year's event, we want to provide you with a few updates:


The event training session will take place on February 29 from 3:00 - 6:00 PM ET and will feature a keynote presentation by former Congressman Jim Nussle (R-IA), who is also a member of the NDSS Board of Directors. Following the training, NDSS is hosting the annual awards dinner at which NDSS Board Chair Chip Gerhardt and Representative Cathy McMorris Rodgers (R-WA) will be serving as Masters of Ceremonies.


This year, the NDSS Policy Center is rolling out our State Captain program for the Buddy Walk on Washington.  We've recruited State Captains to help lead and coordinate each delegation's advocacy day activities through the Buddy Walk on Washington conference. NDSS State Captains are tasked with communicating with participants from their state about Congressional visits. Click here for a list of all State Captains.


The last pre-Buddy Walk on Washington training webinar will take place on Thursday, February 2 at 1:00 PM ET. Click here to register


If you have not yet participated in a pre-event training webinar and cannot join us on February 2, please click here to review the slides from the first pre-Buddy Walk on Washington training webinar.


Click here to visit our website for more information about the 2012 Buddy Walk on Washington and continue to check back for updates between now and the event.


Click here to email Sara Hart Weir, NDSS Senior Policy Advisor, or call 202-680-8867 with any questions or comments.


ABLE ACT: Briefing and Cosponsors Needed


On February 16, NDSS will co-host a briefing on Capitol Hill on the Achieving a Better Life Experience (ABLE) Act for Members of Congress and staff. NDSS Board Member Steve Beck will be speaking at the briefing. The ABLE Act of 2011 (S. 1872/H.R. 3423) was introduced on November 15 and will give individuals with disabilities and their families the ability to save for their child's future just like every other American family, and help people with disabilities live full, productive lives in their communities without losing benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary's employment, and other sources.


We currently have nine cosponsors in the Senate and 83 in the House. Click here to view a list of the cosponsors and to email your Representative and two Senators if they have not yet signed on.


Elementary and Secondary Education Act (ESEA) Reauthorization Bill Introduced


On January 6, the House Committee on Education & Workforce released a draft bill titled "The Student Success Act." This bill, which reauthorizes certain sections of No Child Left Behind (NCLB)/ESEA, would have the effect of weakening and/or eliminating critically important federal requirements that currently ensure that states set high academic performance goals for all students, work to close achievement gaps, ensure that students have highly qualified teachers and improve struggling schools.  This draft bill will also do the following:

  • Negatively affect students who take alternate assessments on alternate academic achievement standards (AA-AAS)
  • Codify in statute language in current regulations that has been implemented in some states in a manner that limits access to the curriculum and even precludes some students from working towards a regular high school diploma

NDSS is working to change the language in the regulations, as it will be much harder to change if the bill is enacted into law. In addition, the draft bill eliminates the 1% cap related to these assessments, which will mean many more students will be inappropriately removed from the regular state assessment. Further, the bill would eliminate the maintenance of effort requirement, which ensures that state and local funding is not reduced from year to year, except if an exception in the law applies. NDSS has joined with other disability, civil rights and business organizations in opposing the draft bill. NDSS also has serious concerns about the Senate Committee-passed bill. It is up to the Down syndrome advocacy community to convey to members of Congress their concerns about these bills and the need to keep all students, including those with intellectual disabilities, in an effective ESEA accountability system. 


NDSS Responds to Flawed Report to Congress


The Congressional Research Service (CRS) released a report on the alignment of Individuals with Disabilities Education Act (IDEA) and NCLB/ESEA. This report contained inaccuracies and omitted important information with respect to students with disabilities, especially those who take alternate assessments (AA-AAS). NDSS, along with other stakeholders, developed a detailed response commenting on all the assertions and recommendations in the report that could negatively impact students with disabilities. Of particular concern are misstatements that give the false impression that under IDEA the Individualized Education Program (IEP) goals represent the entirety of the curriculum for students with disabilities and that under ESEA students who take alternate assessments are not taught to the state content standards. NDSS will meet with the authors of the CSR report as a follow up on the letter. 


Senate Restraints and Seclusion Bill Introduced


NDSS strongly supports the Keeping All Students Safe Act (S. 2020) which was introduced by Senate Health, Education, Labor & Pensions (HELP) Chairman Tom Harkin (D-IA) in December. This bill would protect students from ineffective and dangerous seclusion and restraint practices in schools. It will ban physical restraint except in emergency situations when there is an immediate threat of serious bodily injury.  The bill bans seclusion (confinement) of children in locked rooms or rooms from which they cannot exit.  It bans life-threatening restraint that interferes with breathing or the ability to communicate, and bans mechanical and chemical restraints.  It requires schools to notify parents within 24 hours of restraint.  Unfortunately, too many parents never find out their child has been restrained - a practice that is potentially emotionally and physically damaging. Stay tuned for an NDSS action alert on this issue.

Click here to read the NDSS support letter for S. 2020.   



Sign up to Receive Important Policy Action Alerts

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.


Monthly Webinars

Each month, NDSS provides a free educational webinar to anyone who is interested in learning more about Down syndrome and related topics, such as health, education, research, family life and more. In past months, families, self-advocates, affiliates and others have enjoyed presentations on oral health, with Dr. Jessica DeBord, vision with Dr. William Motley and an innovative, inclusive camp program with Jenni Newbury.


Click here for more information on past NDSS webinars.   


In February, the NDSS webinar will be "Executive Functioning in Students with Down Syndrome." The presentation will take place on February 23 at 1:00 PM ET and include guest speakers Dr. Deborah Fidler, Associate Professor in the Department of Human Development and Family Studies at Colorado State University, and Dr. Lisa Daunhauer, Assistant Professor in the Department of Human Development and Family Studies at Colorado State University.   

Click here to learn more and to register.



Buddy Walk® News

To learn more about the National Buddy Walk® Program, visit


Registration is Open for the 2012 Buddy Walk Conference!    


The 4th annual Buddy Walk Conference will take place on Saturday, April 28 from 8:00 AM - 4:30 PM at the beautiful Seaport Hotel in Boston, Massachusetts.

You won't want to miss this opportunity to share ideas and best practices with Buddy Walk organizers from across the country at this exclusive one-day meeting.

The 2012 Buddy Walk Conference will build on the success of the previous Conferences and will include:

  • An awards presentation at the opening plenary honoring exemplary groups and organizers
  • The opportunity to sign up for "Ask The Expert" sessions with NDSS staff and speakers
  • Interactive sessions to allow for more questions and answers
  • Increased opportunities to learn from veterans of the Buddy Walk program
  • An expanded "Idea Exchange" and Exhibitor Marketplace
  • An additional networking opportunity on Saturday night (at your expense)

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 about the conference.
Click here to register for the conference.

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 co-sponsored by the Massachusetts Down Syndrome Congress.


2012 Buddy Walk Season


Registration is open for the 2012 Buddy Walk season!  Please remember that a new registration must be completed each year in order for your group to remain a part of the national program.  Once your Buddy Walk registration has been received by the NDSS office, a custom license agreement will be emailed to you.  When the signed agreement is returned to the NDSS office (by mail, fax or email) your Walk registration will be processed.   


Click here to log-in and register your Buddy Walk.  

Don't remember your password? Click here to have it emailed to you.


Share Your Buddy Walk Stories


Do you have great memories of your Buddy Walk? Share your story with the My Great Story public awareness campaign! Click here to view the Buddy Walk section and click the 'submit' bookmark to add your story!

Thank You!

The NDSS Buddy Walk staff is working on a little something to celebrate your participation in the National Buddy Walk program.  Please click here to answer a quick one question survey to make sure our information is correct!


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.  

 Team NDSS Athlete Christopher Steele 

Chris Steele from Wesley Chapel, FL, contacted NDSS in December to learn how he can get more involved in honor of his son, Thomas, who will turn one this month.

Thomas Jackson Steele was born on February 7, 2011 to Chris and his wife, Peggy. At six months, Tommy had open heart surgery to fix a hole in his heart. Today, Tommy is full of life. He sleeps through the night, eats everything in sight and says "mama," "dada" and "baba." He has his two bottom teeth and a laugh that will make you forget all your troubles.

Chris had started marathon training after watching his wife complete the Chicago Marathon. During one of his long runs, he started thinking about his family and how much he would like for his son Tommy to do something like this one day.

He searched the internet for organizations with which he could get involved, came across NDSS and contacted us immediately. In an early conversation, Chris shared, "Your mission speaks to me. You are the national advocate for the value, acceptance and inclusion of people with Down syndrome. That is exactly what I want... to be an advocate. Without making public awareness a priority around the world, where will we be in the next 20 years? I can't just sit on the side and expect someone else to take care of it."

Team NDSS is a perfect fit for Chris. He registered for the Rock and Roll Marathon in Washington, D.C. that will take place on March 17.
On January 18, he started his Team NDSS fundraising campaign and has raised over $3,500, most of which was donated within 48 hours of his initial solicitation. Like many of the Team NDSS participants who have come before him, he is humbled and overjoyed by the response from his friends, family and neighbors. For Chris, this feels like only the beginning. 

Click here to view Chris's personal fundraising page.
Click here to learn more about Team NDSS.
Click here to contact Pam Sandonato, NDSS VP of Development, about fundraising your own way.


Do You Blog?



Recently, NDSS has been looking to connect with bloggers who share their stories, wisdom and journeys about Down syndrome.  We have received so many wonderful responses from parents, siblings and friends of people with Down syndrome who blog about their loved ones - thank you to those who shared your blogs with us! We just launched our first blogger initiative, and reached out with our new World Down Syndrome Day button and a number of ways to get involved and celebrate!


If you blog and would like to grab this button and "do something extra" in celebration of those with an extra 21st chromosome for World Down Syndrome Day, please click here to email your name, blog title and URL to Jordana Stern, NDSS Communications Associate.  

NDSS Signature 3:21 

T-Shirts: Call for Models!

NDSS recently launched a line of signature t-shirts featuring 3:21on the front, symbolic of the third copy of chromosome 21 in Trisomy 21, and the NDSS logo on the back. The t-shirts are for available men, women and children, and  $5 will be donated to NDSS for each t-shirt purchased. 


If you've bought a signature 3:21 t-shirt, we'd love to see how it looks! Please click here to email your NDSS 3:21 t-shirt photos to Jordana Stern, NDSS Communications Associate.  


If you're interested in buying a t-shirt, it's not too late! Click here to view the collection and make a purchase (and send us your 3:21 t-shirt photos too!).


A selection of 3:21 t-shirt photos will be set to music and uploaded to the NDSS YouTube Channel in celebration of World Down Syndrome Day on March 21!


Come Together for a Cause

NDSS is seeking leaders from across the country to join us in an effort to plan multiple events in multiple cities on Wednesday, March 21.  We have chosen this specific date because it is official World Down Syndrome Day!  


Here are some exciting happenings taking place on March 21:


5th Annual Dream BIG Benefit

6:00 - 9:00 PM CT

9 West Hubbard Street

Chicago, IL
Hors d'oeuvres, cocktails, dessert, raffles and prizes



NDSS Young Leadership Committee Celebrates World Down Syndrome Day

7:00 - 10:00 PM ET

Lucky Strike

42nd Street & 12th Avenue

New York, NY

Bowling, Hors d'oeuvres, cocktails, raffles and prizes 


Join the Virtual Party!

NDSS is hosting a Twitter party on World Down Syndrome Day with live tweeting from the events above and others across the country. Whether you're attending an event or hanging at home, join our virtual celebration by using #321 in your tweets!


Consider starting an event in your area that can expand our presence in your community and raise money and awareness in honor of World Down Syndrome Day.   Click here to contact Pam Sandonato, NDSS VP of Development, to share your thoughts and learn how you can help make a difference your own way. 


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 Elizabeth Rice of Morton, IL. She is working to earn a two-year certificate from Illinois Central College.


"I am very honored to receive the O'Neill Tabani Enrichment Fund scholarship and I thank you for giving me the award.  It will help me out for my tuition and getting my textbooks at Illinois Central College. 


My name is Elizabeth Rice.  I go to ICC part time and I have a great GPA average!  It is 3.8!  Currently I have approximately 30 credit hours in my major of Child Development.  I hope to resume working in the child care field when I have completed my certificate, or my associate's degree. 


It is important to go to ICC because I want to have a great education and go beyond my imagination!  Education can take it to the next level in life.  And then you go on in the future and plan out what to do with your life and to achieve beyond your imagination.  If you go on in school, these dreams can be yours. 


Let me tell you what I like best about school!  I have a great circle of friends.  I like school because I have passing grades in my classes that I take, and I have the time to have lunch with my friends.  I like school when I get my homework done at school, and sometimes when Mom helps me with it when I don't know where to look for the answers. Together we put our heads together and brainstorm!  And, I like my Instructor who is teaching the class.  And then the school semester goes fast as well.  When you are busy, you are happy. 


Recently I was asked to deliver a speech to the AAUW.  That is the local chapter of the American Association of University Women.  I did a slide show on Mom's laptop.  Part of my speech was based on my talk that I gave in New York City at the NDSS Spring Luncheon.  It was a hit! Everybody enjoyed my memories of being awarded the NDSS Melissa Riggio Voices Award.  I was excited because I received a thank you note from AAUW with a check in the thank you note!  It was a $30.00 dollar check.  My first paid speaking engagement!  


Thanks again to NDSS for assisting me to achieve my very best."


NDSS congratulates Elizabeth 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. 


My Great Story of the Month Contest 




Congratulations to Cyndi Johnson, of Bloomington, IN on winning the My Great Story of the Month Contest! Cyndi's story received the most votes in January, so she will be receiving a $50 gift certificate to

In February, the author of the story with the most votes will also win a $50 gift certificate to Share your story and spread the word throughout the month to win this prize!

Click here to share your story. 


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My Great Story: Stories of the Month


Each month, the two stories with the most votes on the My Great Story site are featured as the Stories of the Month. The votes are reset at the end of each month.


To share your own story, or to vote or comment on others, visit

Cyndi Johnson

Bloomington, Indiana


Last August when I searched the yellow pages for dance classes for my four-year-old daughter, Rebecca, I had no idea of the surprises that lay ahead. I picked up the phone and called the first number listed. "Do you offer classes for preschoolers?" The answer came, "Oh yes, we have a combo class...." But the tone changed dramatically when I asked if they could accommodate a child with Down syndrome. "No, we can't...." I dialed a second number and then a third, but the response was the same each time.

Determined, I dialed yet another number. "Do you have any openings for a four-year-old girl?" When the instructor indicated there were spots available in her preschool class, I simply said, "I'd like to register my daughter...."

I did not mention Down syndrome during the phone conversation but decided to go early to the first class to speak with the instructor directly. When we arrived, you could have toppled the instructor with a feather. There stood Rebecca - tiny for her age due to her medical conditions - in her pink leotard and tutu, clutching her ballet slippers and tap shoes, her eyes sparkling through her glasses. The instructor broke the silence, "She can't possibly be three yet," to which I replied, "Rebecca actually turned four a few weeks ago and had a ballet birthday party! She dances every day. She has some issues like low muscle tone and hearing loss, but I believe she'll do fine." The instructor began lecturing me on how Rebecca must listen and behave appropriately if she was to participate, when in walked another mother with her daughter.

What happened next took everyone by surprise. This little girl also wore a pink leotard and tutu, but she shared something else in common with Rebecca. It was obvious that she too had a disability - some physical limitations and eyeglasses with thick lenses. The expression on the instructor's face turned from surprise to resignation, and she directed the girls to choose a colored square on the studio floor and have a seat.

Other girls arrived, and class began. Rebecca followed directions, waited her turn, and even put on her own tap shoes. She only needed help tying the laces (as did all the girls!). Rebecca's ability and cooperation clearly came as a surprise to the instructor, and she exclaimed after class almost in disbelief, "Rebecca did a great job!"

Over the next several weeks, Rebecca surprised even me as she learned the entire dance routine and performed in her first recital. Her father and grandparents were in attendance and were astonished. I watched proudly as other onlookers pointed her out and described her performance as "impressive," "adorable," and "a show stopper." Afterward, the instructor gave her a hug and warm words of praise. In the end, I suspect she was the most surprised of all - not only by Rebecca's capabilities, but also by the transformation that occurred within her own heart and mind.


I Love You Mommy
Laura Wilson
North Pole, Alaska


When my daughter Lorren was about two years old we were sitting at a local store eating lunch when a man approached us. Because Lorren was always smiling at people and they always responded I assumed he was approaching to comment about how sweet she was (no I am not just a proud parent, that was and still is a very common response to Lorren). Instead his first words were "there is tremendous power in prayer." 

"Yes," I said, "I happen to be Christian and believe very strongly in prayer and my faith, thank you," thinking now he will go away, his conversion is unnecessary. Well he didn't stop, he said something to the effect of no, she could be healed through prayer. Stunned, I looked at him and responded that I happen to believe God made her exactly the way he wanted her to be, that we consider her extra chromosome to be a love chromosome because she gives it unconditionally and Down syndrome isn't an illness, it is part of how she was created. Anyhow, this went on for a brief period before he finally left saying consider it.
Obviously I was furious and as Lorren and I proceeded through the store I was fuming and muttering under my breath. All of a sudden Lorren reached her little arms up, wrapped them around my neck, looked me in the eyes and said, "I love you, Mommy" for the first time, clear as day. My heart melted, and I started to cry. My beautiful, wonderful little girl felt my pain and just knew what to do. Thus proving my point - that extra chromosome truly is the "love" chromosome. Lorren is nine now, and that ability to know exactly when to reach out to another person is still what makes her hugs so very special. There is no such thing as a bad day when she is around. She make you laugh or just give a huge hug and say "I love you," and everything is all of a sudden better. Yes, there is tremendous power in prayer, I believe God answered my prayers and gave me a very special gift.


My Great Story

in the Media

The My Great Story campaign has had some exciting new placements across various media this month! 


In Long Island, NY, host Jeffrey Silverman interviewed Jordana Stern about

the My Great Story campaign and other NDSS initiatives.     






Parents magazine published an article by Amy Julia Becker on their website that covered the My Great Story campaign among other resources.

Click  here to view the segment. 





The My Great Story PSA was shown on Jan 23 on NBC Sports during the show Majesty Outdoors.

If you didn't catch it this time, you will have another chance! The episode starring Self-Advocate Mario Soto in action on his first ever fishing trip will

air again on April 23.   Click here to find NBC Sports Network in your area.

Click here to learn more about Majesty Outdoors.

Click here to view the My Great Story PSA.



NDSS would like to extend a special shout out to everyone who blogged, posted, tweeted and retweeted about the My Great Story campaign this month. Here are a few of those who did:


Crystal Hohnstein Bridwell-Miller

Angela Woods Reid

Terry Trower

Alicia Stevenson 

Debbie Kilgore


If you've shared the My Great Story campaign through Twitter, Facebook, a blog or another social media outlet, please click here to let us know! 


Thanks for all of your support and continuing to spread the word!


Social Media

To keep up with the latest NDSS news and create some buzz:

Click here to become a fan of the NDSS Facebook page.

Click here to become a fan of the Buddy Walk® Facebook page.

Click here to follow NDSS on Twitter.

Click here to follow the Buddy Walk on Twitter.