National Down Syndrome Society E-Newsletter


May 2011

My Great Story Campaign Monthly Contest! 


In an effort to expand the My Great Story national public awareness campaign, NDSS has formed partnerships with several companies to create further awareness for the campaign and its collection of stories. Kicking off on May 1, NDSS is proud to announce the My Great Story of the Month Contest! Readers are encouraged to vote for their favorite stories. The author of the story with the most votes at the end of every month will win a prize valued at $50 or more. is proud to be the first corporate partner to support the campaign. The My Great Story of the Month Contest winner in May will receive a $50 gift certificate to 


Visit and click on the 'contest' bookmark for more information.



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Click here to read the stories in the My Great Story collection and vote for your favorite! 


NDSS National Policy Center Update


  • On April 12, 2010 NDSS policy team members, as well as other members of the Collaboration to Promote Self Determination (CPSD), met at the U.S. Department of Education with Deputy Assistant Secretary of Education, Sue Swenson, Office of Special Education Programs Director, Melody Musgrove, and their staff. NDSS was a founding member of CPSD and Madeleine Will, NDSS National Policy Center Director, is a chair of CPSD's Education Committee. We discussed CPSD's recommendations to ensure inclusive opportunities in education and employment, the preparation of skilled teachers and access to the curriculum for students with significant disabilities. These recommendations include changes to the regulations governing alternate assessments and an emphasis on Universal Design for Learning (UDL).
  • One of the pieces of legislation discussed at the meeting was the Transitioning towards Excellence in Achievement and Mobility (TEAM) Act. To address several systemic barriers faced by Americans with significant disabilities transitioning from youth to adulthood and to better promote their advancement, a trio of bills called the TEAM Act legislation was introduced in the U.S. House of Representatives on February 10, 2011. These bills are called the TEAM-Education Act, TEAM-Empowerment Act, and TEAM-Employment Act. The TEAM legislation is the product of collaboration between Congressman Gregg Harper (R-MS) and CPSD. An action alert was sent out recently asking for your help in signing up your local elected officials as co-sponsors for these bills. If you have not already done so, please click here to take action on this alert. 
  • NDSS has also been very involved in the development and promotion of two other important pieces of recently introduced legislation that need co-sponsors. One is the Individuals with Disabilities Education Act (IDEA) Fairness Restoration Act, which would ensure that a family's ability to defend a child's educational rights is not compromised by having to bear the expense of expert witness fees. This Wednesday, May 4, we are urging families to call or email your Senators and Representatives and ask them to co-sponsor this bill. Please click here for more information and to take action.

  • NDSS also needs House co-sponsors for the Keeping All Students Safe Act. This bill would, for the first time, put in place minimum safety standards to prevent abusive restraint and seclusion in schools across the country, similar to protections already in place in medical and community based facilities. Please click here to take action on the alert for this bill.

Sign up to Receive Important Policy Action Alerts


Be an Advocate!


There are many ways that 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 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.

NDSS National Policy Center Blog


NDSS National Policy Center Blog: Go Behind the Scenes!


The NDSS National Policy Center Blog will give you a glimpse into how our policy center works. You may learn about a meeting at the White House or an experience one of our staff members had with a member of Congress. Also look for special guest bloggers and important updates!


Click here to view the blog.

Buddy Walk® News



NDSS Buddy Walk® Ranks Nationally 


NDSS is proud to be recognized by the Run Walk Ride Conference, a national event organized by the Cause Marketing Forum, which was held in March. Once again, NDSS was ranked alongside the nation's leading charitable organizations, and ranked higher than last year in all categories across the board!

The Buddy Walk® is ranked:

  • #22 for dollars raised (a 7.37% increase this year!)
  • #9 for number of events
  • #9 for number of participants (up 14% this year!) 

Second Life Buddy Walk


NDSS has an extremely internet savvy Buddy Walk organizer in the Chicago area who recently held her 3rd successful virtual Buddy Walk on March 21, World Down Syndrome Day. The efforts of Jennifer Paganessi, known as BuddyWalk Frenzy in Second Life, can be followed on her blog.


Click here to view her blog. 

More than 300 avatars (event participants) showed up between 11:00am and 10:00pm, raising over $156,000L (over $600). In addition to an 'announcement bot' that gave tidbits about Down syndrome in local chat every 5 minutes and a walking path that featured facts about Down syndrome along the way, the 2011 Second Life Buddy Walk featured live performers throughout the afternoon and evening.


Click here to view pictures of the Second Life Buddy Walk.

Thanks BuddyWalk Frenzy for making a difference in the Down syndrome community locally in Chicago and globally online!


Give Us Your Best Shot: Submit Your Photo for the 2011 Times Square Video


On Saturday, September 24, 2011, NDSS will kick off Down Syndrome Awareness Month and the New York City Buddy Walk in the heart of Times Square with a video presentation featuring more than 200 individuals with Down syndrome from across the world.  We invite you to submit a photo for this one-of-a-kind feature presentation!  The contest will run from May 2 - July 15 and winners will be contacted the week of August 1, 2011. 


Click here for more information about the Times Square Video.
Click here to submit your photo. 


Social Media: Get the Latest Buddy Walk Updates!


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

Click here to follow the Buddy Walk on Twitter.



NDSS Congratulates the Spring Luncheon Honorees and Thanks Sharon Stone for Her Participation as Key Note Speaker

Actress and philanthropist Sharon Stone with self-advocate Elizabeth Rice, recipient of the Melissa Riggio Voices Award.


At the April 27, 2011 Spring Luncheon presented by Barnes & Noble, NDSS honored author Jagatjoti S. Khalsa for his book I'm Down With You: An Inspired Journey, which seeks to capture the beautiful lives and faces of people living with Down syndrome. Although he had no personal connection to someone with Down syndrome before he began the book, Jagatjoti's love and commitment to people with Down syndrome is evident in its pages. His award was presented by Actress and Philanthropist, Sharon Stone, who spoke through tears and smiles about the genuine friendship she has with self-advocate Jim Burkhart, for whom she babysat many years ago. The two have maintained a close relationship and Jim attended the luncheon to support her, as well as Jagatjoti, who photographed the two friends together for his book.

Popular blogger, Kelle Hampton, presented the Melissa Riggio Voices Award to Elizabeth C. Rice from Morton, Illinois. Elizabeth attends Illinois Central Community College, majoring in Child Development. She has been employed at Culver's Restaurant for over five years and is also a camp counselor. She is very active as a volunteer with her school, church and community. Elizabeth's sparkling personality was evident in her acceptance speech, which was entertaining and inspiring. It was easy for everyone to see why Kelle views Elizabeth as a role model not only for her daughter, Nella, but for herself.

Other important guests that graced the stage were Chris Wragge, CBS Early Show Co-Anchor, Jordyn Dannenbaum, a soon-to-be high school graduate from Villanova, Pennsylvania who shared her various college options with the crowd, Steve Riggio from Barnes & Noble and proud father Melissa Riggio who passed away in 2008, and Jo Ann Simons, Chair of the NDSS Board of Directors.

It was a beautiful day in New York City filled with so many gratifying moments. We thank all of those who participated in this joyous occasion.

Click here to learn more about I'm Down With You: An Inspired Journey.  

Click here to read Kelle Hampton's blog, Enjoying the Small Things.

Click here to view photos from the event.


The World of Sounds 


Shirley M. Gebert is an author and life coach focused on developing role models and heroes in kids' lives. In 2004, she took continuing education courses in communication disorders to work with children who have speech delays. Working with her nephew to clear up a lisp, she found her niche and passion in writing stories to use as tools for fun, effective, and interactive speech development. Her stories evolved into The World of Sounds™ series.

In 2010, Shirley met Elizabeth (Liz) Castellano, a life coach and mother of the 2010 New York City Buddy Walk Self-Advocate Ambassador, Matthew Castellano. The accolades and feedback provided by Liz introduced Shirley to the potential benefits her work provides for those with Down syndrome.

Out of a desire to give to those who will benefit the most from her stories, Shirley is donating proceeds from each book to NDSS. Silly Simon and Lucky Lucy are the first books available in The World of Sounds™ series.


Click here for the official website.

Click on each book cover to make a purchase, or click here to buy the books through Barnes & Noble.

Scholar Spotlight


Each year NDSS awards postsecondary scholarships to students with Down syndrome through the Joshua O'Neill and Zeshan Tabani Enrichment Fund. In 2010 seven outstanding students received grants to help cover the cost of their postsecondary or enrichment courses. With the school year quickly coming to a close, NDSS would like to take this opportunity to honor these exemplary young men and women.  


Casey O' Connor 

 Murrells Inlet, SC 

  Coastal Carolina University


Charlotte Woodward
Fairfax, VA
Northern Virginia Community College 


Kayla McKeon
North Syracuse, NY

 Onondaga Community College 


Larry Lane (not pictured)
West Lafayette, IN
Clemson University 


Laura Smith

Lebanon, KY

Elizabethtown Community Tech College



Mary Alice Shartle
Simpsonville, SC
Clemson University


Mollie Tew

Holly Springs, SC

College of Charleston

Enrichment Fund Application Now Available

2011 Joshua O'Neill and Zeshan Tabani Enrichment Fund Application is Now Available

The Joshua O'Neill and Zeshan Tabani Enrichment Fund offers financial assistance to young adults (18+) who have Down syndrome and wish to continue to enrich their lives by enrolling in postsecondary programs or taking enrichment classes that will help them to enhance life through employment, independent living skills, life skills or another way. All applications must be postmarked or emailed by July 15.


Click here to learn more and download the application.

Board Member Profile of the Month: Douglas Biklen


We are pleased to introduce Douglas Biklen as the NDSS featured board member of the month.


How did you first become involved in the Down syndrome community?


In the late 1960s and early 1970s, before there was a right-to-education law, I did research on the abuses in state mental retardation institutions and saw many people with Down syndrome languishing and suffering in the back wards. They were not receiving educational programs even though the institutions were called 'state schools,' and they did not have access to any aspects of community life. At the same time, children with Down syndrome were not being allowed into regular schools in Syracuse, NY where I was working, and there were not supportive living or other community based housing options. I shifted my research and advocacy work to focus on school inclusion and community living. My colleagues and I developed lawsuits to get children with Down syndrome access to inclusion. It was an exciting time, and we were tremendously excited about the results as we saw children respond to opportunity. I wrote about this work in the books Achieving the Complete School, and Schooling without Labels.


How did you become a leader at NDSS?  Why did you choose to work with NDSS?


I chose to work with NDSS because of its incredibly progressive national policy agenda. NDSS understands and unconditionally supports inclusion, universal design of instruction, and community participation. It supports people with Down syndrome speaking for themselves. These are all values that I share. I was also familiar with many of the individuals who have been associated with the Board, including especially Rob Taishoff who has been one of the leading advocates for creating supports to ensure that students with Down syndrome can participate in higher education. I have been involved in supporting inclusive higher education for over a decade and have seen many students with Down syndrome blossom on the Syracuse University campus, so Rob's shared interest attracted me to become directly involved in NDSS as a Board member. I also have known Madeleine Will since the 1980s when she was Assistant Secretary in the Department of Education and asked me to make the first national documentary on inclusive education, a film called Regular Lives that was on PBS. 


Since joining NDSS, what have been some of your favorite initiatives to be a part of? 


I am especially drawn to the work on universal design, inclusive education, and inclusive higher education. I see the latter agenda, inclusive higher education, as one of the most important opportunities before us, as we will certainly discover that people with Down syndrome have abilities and creative talent that has not generally been imagined.


What would you say are some of the critical issues facing people with Down syndrome and their families today?


I think one of the biggest challenges for the field will be to redefine how we understand Down syndrome. With innovations in communication technology, with access to quality schooling, and through inclusion, I expect many people with Down syndrome to demonstrate intellectual abilities that have not previously been anticipated. There are already examples of people with Down syndrome who cannot be described as intellectually disabled, and there is strong interest in building the literacy skills of students with Down syndrome; one of my former doctoral students wrote a book about this, Schooling Children with Down Syndrome. This will be a great challenge for the field and for families, to resist the idea that Down syndrome necessarily translates into intellectual disability and to hold open the possibility that we all can assist people with Down syndrome to achieve excellent literacy, art, music and other creative skills.

Down syndrome is being better understood by multiple disciplines and we will need to draw on knowledge from each. It is likely that parents and family members will be the driving force that demands improved awareness as well as full inclusion in all aspects of society. As I have written elsewhere, families are the one place in society where we can see inclusion fully achieved; we have much to learn from families.   



My Great Story: Mother's Day Section


Throughout the month of April, all were invited to share stories about the moms in their lives. The My Great Story Mother's Day section has been devoted to telling stories about mothers, grandmothers, wives, sisters, aunts, cousins or friends who have a sons or daughters with Down syndrome. Congratulations to self-advocate Jennifer Hinds, whose story received the most votes in the Mother's Day section!


The Best Mom
Jennifer Hinds
Laguna Hills, California


My mom is the best mom in the entire world. She encourages me to try everything. I am very lucky that she is my mom. So I am ready for Mother's Day. I wrote the menu for breakfast, lunch and dinner months ago and I know what decorations I need. I am very organized. My Dad is always my gopher in the kitchen when I come over to cook all day.


The other day on Good Morning America I heard them advertise about Breakfast For Mom With Emeril. On the computer I went and emailed my request for him to come. I told him my mom loves blueberries. I also reminded him that he sent me an autographed cookbook when I received the Melissa Riggio Voices Award in 2010. I hope he also remembers that I sent him back my autographed picture. I told him that I will help him cook the breakfast. I love to cook and I am very good at it.

I take cooking classes and I have a chef's jacket and hat. After I received the award I asked my mom to take me to the Culinary Institute to sign up for classes. The counselor took me and my mom around to the classes that just started. I decided I needed to take more classes locally before going to the Institute. The counselor was very supportive and told me she would wait and then she said "I am sure I will see you soon". She also said they recently placed a student who was blind in a job at a local restaurant. I know they will find me a job too.


I have written my own cookbook which I have dedicated to my mom who taught me so much about cooking. She is the best cook ever. All of my recipes are simple, healthy and yummy.

My next dream is to be on the Food Network to show everyone that people with Down syndrome are great cooks too.



Introducing the My Great Story Father's Day Section!


Father's Day is coming up next month, and the newest My Great Story holiday section will be devoted to sharing and telling stories about the dads in your life! All are encouraged to share stories about fathers, grandfathers, husbands, brothers, uncles, cousins and friends who have children with Down syndrome. We especially want to hear from self-advocates about their dads!


Like last month's Mother's Day section, the top voted story in the Father's Day section will be featured in next month's e-newsletter, so read, comment and vote on the stories in the collection!


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



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 add your own story, or to vote or comment on others, visit


For the latest social media updates, become a fan of NDSS on Facebook and follow

My Great Story on Twitter.


Deon 'The Miracle' Child

Adrian Greaves

Fort Lauderdale, FL


One thing I first noticed about Deon is his strong determination to succeed in life. Over the past two years he has been my student, taking classes in computer science. If you interacted with him you would not know that this loving, caring and ambitious 20 year old had to overcome so many obstacles in his life. As I got to know the family better and also reading the book Unlimited Power: Achieving the Impossible, which tells his life story, I'm truly amazed. I found out that Deon was born a vegetable with many other complications and if he lived to be five his mom would be lucky. Having what I would call a "You can, if you think you can attitude," Deon as well as his mom have taken an impossible situation and turned it into something glorious. I have had the pleasure of seeing him graduate from Piper High School with honors; I would say that this was Deon's proudest moment to date. He calls himself "Differently Abled", which can only place a smile on your face because it is really true. High school graduation is only the beginning for Deon, he intends to pursue college, get his own apartment and become as independent as the guy next door. Deon is also involved with several extra-curricular activities; he's a member of the City of Sunrise Police Department Explorer program which focuses on community service and citizen involvement, he's a basketball and volleyball defense guard on a Special Olympics team, he's avidly involved in church and the list goes on. All I can say is Deon is an amazing young man and with his determination he will go really far in life and I for one will continue to help him in any way I can. Deon reinforces the statement "Dreams do come true."



The second place story for this month, Evan, The Actor, by Evan Sneider from Cape Cod, Massachusetts, was featured in our e-newsletter last month. Click here to read Evan's story.


Making Movies

Brooke May

Savannah, Georgia 


My great story has to do with my two great kids, Charlotte and Jonathan, who are doing more to spread awareness for Down syndrome than anyone in our family could have possibly imagined.

It started a few years ago, when Charlotte and Jonathan got off the school bus one day clearly upset. Charlotte told me that Jonathan, who has Down syndrome, was being bullied on the bus. She also told me she was concerned about the way some children - and even some adults - would stare at Jonathan and talk behind his back, commenting on the way he looks and sounds.

After talking to the school bus driver and nipping the bullying situation in the bud, Charlotte told me she wanted to do more to educate others about Down syndrome and to let everyone know what a great person Jonathan is. I asked Charlotte how she thought we could best accomplish that. After some brainstorming, we decided we would produce a movie. The result was Deedah, a 25 minute documentary named after Jonathan's longtime nickname for Charlotte. (We think Deedah was his first attempt at saying "sister.") In the movie, seven-year-old Charlotte explains that Jonathan, like everyone else with Down syndrome, is not at all different from those of us who do not have that extra chromosome.


Since the film was released, Deedah has been shown at film festivals in our home state of Georgia, as well as Los Angeles, Miami, Orlando and Vancouver, British Columbia. Our blog has received hits from all around the world and last month, we learned that a group in Europe is translating the film in Polish! On April 30, Deedah was shown at the Metropolitan Museum of Art in New York City, as part of the Sprout Film Festival, which highlights the incredible ABILITIES of those with "DIS- ABILITIES." Deedah is also being shown at schools around the country to help to teach tolerance and bullying prevention. Down syndrome support groups have sponsored screenings and are using the film to raise extra funds at Buddy Walks. The film is making its way into new parent packets and is being introduced to the medical community as well.


My husband and I are so grateful that the film has touched those in the Down syndrome community, but we are also humbled at how the film is educating those who previously had little or no familiarity with Down syndrome. Our great story is the story of many others as well: Down syndrome is not a burden, it is a blessing. We hope our film will help to spread that message for many years to come.


Brooke May, Proud mom of Charlotte and Jonathan, Producer of Deedah,


My Great Story PSA to Air on CNN Airport Network


The My Great Story 30-second PSA featuring John C. McGinley will air on CNN Airport Network throughout the month of May! There is a strong chance you may also see it on CNN and HLN nationally.

CNN Airport Network is the only live satellite delivered airport television service that provides up-to-the minute news, information, and entertainment to airline passengers 24/7. There are over 2,000 LCD flat panel screens in the network.

Below is a list of airport locations supported by CNN Airport Network:
1. Albany International
2. Anchorage International
3. Atlanta Dekalb-Peachtree
4. Atlanta Hartsfield-Jackson International 

5. Baltimore-Washington International Thurgood Marshall

6. Boston Logan International
7. Chicago Midway
8. Chicago O'Hare International
9. Cincinnati/Northern Kentucky International
10. Cleveland Hopkins International
11. Dallas/Ft. Worth International
12. Dallas Love Field
13. Dayton International
14. Denver International
15. Detroit Metro Wayne County International
16. Houston Bush Intercontinental
17. Houston William P. Hobby
18. Huntsville Madison County
19. Jacksonville International
20. Kansas City International
21. Ketchikan International Airport
22. Knoxville McGhee Tyson Airport
23. Memphis International
24. Miami International
25. Minneapolis/St. Paul International
26. Myrtle Beach International
27. Nashville International
28. New York John F. Kennedy International
29. New York LaGuardia Airport
30. New York Long Island MacArthur
31. Newark Liberty International
32. Oakland International
33. Ontario International
34. Orlando International
35. Philadelphia International
36. Phoenix Sky Harbor International
37. Saint Louis Lambert International
38. Salt Lake City International
39. San Francisco International
40. San Jose International


My Great Story

in the Media

The My Great Story campaign has received attention across various media this month! Here are some exciting placements:


Talk Stoop, which airs on NBC New York, as well as in cabs all over New York City and gas station pumps across the country, spoke with NDSS Goodwill Ambassador Chris Burke about his career and his work with the My Great Story campaign.  

Click here to view the segment.





The Indy Star, in Indianapolis, IN covered the campaign and highlighted local resident and My Great Story participant, Christina Fite.

Click here to read the article.



Today's CNY Woman published an article about Syracuse, NY resident and My Great Story author, Talina Jones.

Click here to read the article.  





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





Have Ya Heard (HYH)

Eye on Isaac 


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

Social Media

Use your social networking tools to create some NDSS buzz:

Click here to become a fan of the National Down Syndrome Society Facebook page.

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

Click here to follow My Great Story on Twitter.

Click here to follow the Buddy Walk on Twitter.