National Down Syndrome Society E-Newsletter


February 2011

New and Exciting Changes to the My Great Story Microsite!   


The My Great Story public awareness campaign has been a great success, and the new year is bringing exciting changes to the My Great Story microsite! The adjustments apply to stories already in the collection as well as future submissions, and allow users more involvement and interactivity with the stories and their authors.


Some of the updated features include: 


· A unique link for each individual story

· A commenting feature to allow readers to share their thoughts

· A voting feature to be used to determine the My Great Story of the Month

· A holiday section to be adapted throughout the year to match the current season

We look forward to seeing all the new Great Stories!

Click here to check out the updates on the site!



NDSS National Policy Center Update


  • NDSS and the Joseph P. Kennedy, Jr. Foundation have awarded funds to Lettercase, an independent non-profit clearinghouse of information about genetic conditions, to print and distribute a newly revised booklet titled, Understanding a Down Syndrome Diagnosis, which will provide accurate, up-to-date and balanced prenatal information to expectant couples who receive a diagnosis of Down syndrome. The booklet became available on January 31, 2011 and the NDSS Lettercase funding plan includes a nationwide distribution of 10,000 complimentary copies. Click here to see a copy of the press release.
  • NDSS submitted comments in response to the U.S. Department of Education's Assessment Technology Standards Request for Information. In our comments we explained how Universal Design for Learning (UDL) affects the accessibility of assessments. We also raised concerns about the potential use of computer adaptive tests for state assessments. These tests "adapt" by limiting the questions presented to a student, based on prior incorrect answers. It is essential to ensure that the programming of these tests is not solely based on assumptions about learning patterns that may not be applicable for some students. For example, a computer adaptive test might not allow a child with Down syndrome to answer higher level concrete questions because he/she couldn't answer a lower level abstract question. This "decision" by the computer might prevent the child from demonstrating the full range of his/her abilities.
  • NDSS, together with a member of our Maryland Governmental Affairs Committee, Heather Sachs, developed a case study on one state's successful advocacy efforts to pass a UDL bill. This paper covers the steps taken and the lessons learned, including information that would be helpful to advocates working on any state or national policy issue. In addition, the appendix to this case study contains documents that another state could adapt to its own use in pursuing UDL legislation. Click here to view both the case study and the appendix.
  • Last year NDSS and George Mason University sponsored the 2010 National State of the Art Conference on Postsecondary Education and Students with Intellectual Disabilities. The conference was a rousing success! Planning is now underway for the next conference that will take place on November 3 and 4, 2011 so be sure to save the date! Click here to see presentations from the 2010 conference.
  • The Benefit Offset National Demonstration (BOND) is a new demonstration program to see whether different program rules will help Social Security Disability Insurance (SSDI) beneficiaries who want to work (or work more) have better financial outcomes. Congress asked the Social Security Administration (SSA) to test the effect of reducing the SSDI benefit by $1 for every $2 of countable earnings above the Substantial Gainful Activity (SGA) threshold. This is known as the $1 for $2 benefit offset. Although SSA offers various work incentives to encourage employment for workers with disabilities who receive these benefits, program rules that reduce benefits to zero after earnings reach the SGA threshold clearly create a financial disincentive to employment. In addition to offering a positive financial incentive through the benefit offset, BOND will also test whether offering some participants enhanced work incentives counseling will lead to more employment and higher earnings. NDSS will carefully watch this unfolding demonstration.  

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.

NDSS and its Partner Lettercase Celebrate the National Distribution of a New Down Syndrome Prenatal Booklet


The National Down Syndrome Society has joined forces with Lettercase, an independent non-profit clearinghouse of information about genetic conditions, in an effort to ensure that expectant couples learning about a diagnosis of Down syndrome receive accurate up-to-date and balanced prenatal information. An updated edition of the prenatal booklet titled, Understanding a Down Syndrome Diagnosis, will be available on January 31, 2011, including a nationwide distribution of 10,000 complimentary copies funded by the National Down Syndrome Society and the Joseph P. Kennedy Foundation.

The revised booklets were created with input and consensus from both the medical and Down syndrome communities, including the American College of Medical Genetics, the American Congress of Obstetricians and Gynecologists, the National Society of Genetic Counselors, the National Down Syndrome Congress, and, of course, the National Down Syndrome Society.

Since 2006, NDSS has been at the national forefront of the effort to provide reliable information to physicians and medical experts about the capabilities and achievements of people with Down syndrome. Through a generous donation from the Joseph P. Kennedy Jr. Foundation, NDSS was able to focus efforts on the ever-changing landscape of prenatal testing, specifically regarding the type and quality of educational materials about Down syndrome available to medical professionals.

To complete this process, NDSS has awarded the funding to Lettercase to allow for the update, production and distribution of the first round of revised booklets. The initial goal is to distribute 10,000 booklets to the medical community, legislators, and local Down syndrome organizations through conferences, medical journals, and other forums. The ultimate goal is to have physicians and other medical professionals distribute quality information about Down syndrome to the 4.1 million women who will be offered prenatal testing annually.

NDSS is proud to have spearheaded an initiative of such compelling urgency and importance to the entire Down syndrome community. "Our goal has been to create and seize any opportunity to supply accurate information to medical professionals, pregnant women and their families, and community members at large. Through collaboration with Lettercase, the opportunity arose, and now the goal will be realized," states Jon Colman, President of NDSS. This initial printing and distribution of the revised Understanding a Down Syndrome Diagnosis will reach medical geneticists, genetic counselors, and obstetric medical providers across the country.

The booklet will be available for purchase through Lettercase starting January 31, 2011. For further information please click here to contact Stephanie Meredith directly at Lettercase.

The 10,000 complimentary booklets funded by NDSS are allocated to specific nationwide distribution programs for medical professionals through the national medical organizations.



Buddy Walk® News


2010 Buddy Walk® Recap


We would like to thank all the organizations and individuals that held a Buddy Walk® in their community during the 2010 Buddy Walk season. We are excited to announce that, despite the tough economy, last year was a record breaking year with both funds raised and the number of participants showing significant growth. Although a number of Walks reported a decrease in funds raised, the revenue generated nationwide increased nearly 15% to $11,200,000. In addition to an increase in dollars raised last year, we also experienced a significant rise (nearly 15%) in the number of participants. More than 285,000 individuals took part in a Buddy Walk in 2010, spreading the message of acceptance and inclusion of individuals with Down syndrome to more people - and in more communities - across the country.


We look forward to working with you to make your 2011 Buddy Walk as successful as it can be. Please click here to contact the Buddy Walk staff with any questions or to share your success stories with us.


2011 Buddy Walk T-Shirt Design Contest Winner


The NDSS National Budy Walk Committee would like to congratulate Richie Hollins of Mechanicsville, Virginia, for creating the winning t-shirt design, which will be available for all Buddy Walk events to use for their shirts and other promotional items. The Committee would also like to thank everyone who submitted entries for the 2011 T-Shirt Design Contest for their time and effort. We were impressed by the number and quality of submissions and look forward to seeing the creative designs in our next contest! 


Registration is Open for the 2011 Buddy Walk Season!

We are currently accepting registrations for the 2011 Buddy Walk. We are excited to build on the success of last year's season and reach new heights this year.

Once your Walk is registered, you will receive a License Agreement via e-mail that has been customized for your 2011 Walk. When your agreement has been signed and returned to NDSS, your Walk registration will be processed.

Click here to register your Buddy Walk today!


NDSS is Pleased to Announce that Registration is Open for the 2011 Buddy Walk® Conference!

The 3rd annual Buddy Walk Conference will take place on Saturday, April 30 from 8:00 am-4:30 p.m. at the beautiful Hilton San Diego Gaslamp Quarter in San Diego, CA.

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 2011 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, sponsored by Okobos
  • 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 the 2010 Buddy Walk Conference:

"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 have any questions, please click here to e-mail Becky Switalski, 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 Down Syndrome Association of San Diego.




Mission Fish Donors


Thank You Mission Fish Donors! 


Back in 2008, artist Joe Wojdakowski from Bangor, Maine, reached out to NDSS to ask if we would consider creating an online profile with Mission Fish, a fundraising arm of eBay. We were eager to partner with this very talented artist in an effort to help him raise money in honor of his son Joshua, who has Down syndrome, and it is always great to learn about new ways to reach a wider audience. At the time, we had no idea it would introduce us to so many great people!

In nearly three years, there have been 700 listings on eBay that advertise proceeds from their sales going to the National Down Syndrome Society, all of which are accompanied by a little yellow and blue awareness ribbon. Each listing has brought attention to our cause. We are so grateful for it! Of the 700 listings, 250 of the items have sold and collectively, they have raised nearly $1,000.

So, this is a long overdue thank you to our friend, Joe, who was the catalyst for our Mission Fish application, and to all of the people who are helping to raise awareness and funds for Down syndrome on eBay. We really love hearing your stories about why you chose to support NDSS.


Click here to view Joe's website.

Click here to visit Mission Fish.

Nella's ONEder Fund


Naples, Florida resident, Kelle Hampton, created Nella's ONEder Fund as a fundraising initiative to benefit the National Down Syndrome Society. The ONEder Fund was established in honor of her daughter Nella, who has Down syndrome, on the occasion of her first birthday. It was launched on January 7th via her award-winning blog, "Enjoying the Small Things."

In a January 3rd email conversation about her fundraising goal, Kelle said, "My goal? $15,000, baby. I wanna hit hard. If blog followers alone [which make up only a percentage of readers] each gave only THREE dollars, we'd have over $18,000!"

Kelle's efforts towards the ONEder Fund definitely "hit hard" in a very short timeframe. In less than 24 hours, she surpassed her $15,000 goal. Within one week, the ONEder Fund soared passed its new goal of $47,000 and the following week, it exceeded a goal of $63,000.

We are thrilled to report that in three weeks, Kelle's efforts have amounted to over $104,000 through donations large and small.

Nella's ONEder Fund by the numbers:

  • 4,950 = the number of individuals that made a donation to the ONEder Fund between January 7 - January 31, 2011
  • 350 = the number of donations from international supporters representing 12 countries
  • 51 = the number states and our nation's capital, Washington D.C., from which donations were sent - from the North Pole, Alaska to Key West, Florida and everywhere in between
  • 14 = the number of online retailers that agreed to donate proceeds from sales, including several that designed a custom product for the Fund
  • 10 = the number of donations that came from donors on military bases in different corners of the world

Feeling inspired? Kelle's efforts motivated some of her readers to spin off their own fundraisers to support the ONEder Fund.

Molly holding a sign she made for her party 

Molly Dunn, a young woman in the Cincinnati area, is hosting her 9th birthday party next weekend, and in lieu of gifts, she asked her friends (all of the girls in the 3rd grade class) to make a contribution to Nella's ONEder Fund. Molly has a good friend who has a sister with Down syndrome and she and her mom, Randi, have been following Kelle's blog for almost a year.

Dana Wainstein, a mother of three outside of Philadelphia, was motivated to put together her own online fundraiser using a link from Kelle's donation page. She and her husband elected to solicit their family, friends and business contacts in honor of their son Jake's 2nd birthday and before they knew it, they raised over $7,000! They were floored by the response and thrilled to be able to join forces with Kelle in the effort to raise awareness about Down syndrome.

We told Kelle about her protégés and we asked if she would recommend a project like this for others in the community. Her response was, "NDSS made the job of setting up a fundraiser for our daughter's first birthday easy and completely manageable. With just a few photos and some information we provided, we had a site set up in very little time."

This is an opportunity for NDSS to invite you to work with us on a fundraiser of your own. A milestone birthday. A special occasion. A tribute to a loved one. We will customize a web page and will work to create a solicitation and acknowledgement plan with you. We are easily accessible and we enjoy sharing these inspirational moments with members of our community.

Click here to contact Pamela Sandonato, Vice President of Development, to get started.

About Enjoying the Small Things:

Kelle Hampton began writing "Enjoying the Small Things" in December 2007, after her first daughter, Lainey, was born, and it has grown in popularity since her second daughter, Nella, was born in January 2010. The Hamptons were surprised to learn that Nella had Down syndrome, and now, almost one year later, they are celebrating acceptance, opportunity and similarity, rather than difference and fear of the unknown. The blog is among Babble's Top 50 Mom Bloggers of 2010, and has won The Bump's 2010 Mommy Blog Award for Best Special Needs Blog, as well as the 2010 BlogLuxe Award for Blog You've Learned the Most From.

Click here to visit Kelle's blog, and click here to read the post in which she launched Nella's ONEder Fund.


Scholar Spotlight: Casey O'Connor


Each year NDSS awards postsecondary scholarships to students with Down syndrome through the Joshua O'Neill and Zeshan Tabani Enrichment Fund. Last fall, seven outstanding students received grants to help cover the cost of their postsecondary or enrichment courses. Recipients of the 2010 Joshua O'Neill Zeshan Tabani Enrichment Fund were invited to write about their experiences as students for the "Scholar Spotlight."

This month's installment comes from Casey O'Connor. Casey is an accomplished musician and regularly plays blues harmonica with his dad's band. He likes reading and watching movies. Casey works at a movie theater, but his dream job is to be a professional golfer. In his words, here are Casey's impressions of college life.

Casey in his dorm room at Coastal Carolina University

"I am Casey O'Connor. I live in Murrells Inlet, South Carolina with my parents, who I love to death. I am writing this article because I am one of the 2010 Joshua O'Neill and Zeshan Tabani Enrichment Fund recipients, and I am a student in the L.I.F.E. Program at Coastal Carolina University. L.I.F.E. stands for "Learning Is For Everyone." I am a sophomore. I think Coastal Carolina University is a great college to go to because it is a beautiful campus. Coastal is a campus full of sharing. Friends, mentors and professors all help me learn. We have a good time. I live in the dorm with three other guys. We get along great. I like Coastal because the classes are interesting and the people are nice. I am doing well in my classes so far. My favorite class to go to is Personal Fitness because I like all of the activities and I can participate. Last semester I took history. It was very interesting. We learned about World War II. The best part about Coastal is all the games and activities that we go to. I like to cheer for Coastal during different sporting events that go on around the campus. I get to work with the football team and in the library. My goals at Coastal are to find a job that I am good at, learn to live on my own so I can have my own place, meet new friends, enjoy all the activities and learn about being a winner. All the L.I.F.E. program students are learning a lot. We can use the strength that Coastal Carolina University gives us to take our place in the world."


The Joshua O'Neill and Zeshan Tabani Enrichment Fund seeks to offer financial assistance to young adults with Down syndrome who are 18 years old or older, who wish to continue to participate in postsecondary education programs or enrichment courses to gain employment and other important life skills contributing to their independence. Click here to learn more about the Joshua O'Neill Zeshan Tabani Enrichment Fund.



Board Member Profile of the Month: Joe Bockerstette 


We are pleased to introduce Joe Bockerstette as the NDSS featured board member of the month.


Joe BockerstetteHow did you first become involved in the Down syndrome community?

My daughter Amy, who has Down syndrome, was born in the fall of 1998 in Fort Wayne, Indiana. At the time, there was no local Down syndrome support group, so my wife, Jenny, and I didn't meet another area family of a child with Down syndrome for a year. In October of 1999, a local mother of a child with Down syndrome, Deb Gavette, hosted the first Buddy Walk in northeast Indiana. The Walk included about 150 people, raised $6,000 and was a terrific success. After the Buddy Walk, we joined with several other families on a formation committee to begin the Down Syndrome Association of Northeast Indiana (DSANI) in March of 2000. Both Jenny and I served on the DSANI board in various roles for the next 11 years.

How did you become a leader at NDSS?

Like he has done for so many others, Tom O'Neill, a friend from Fort Wayne and past NDSS Board Chair, introduced me to the organization. I spent many years on the Finance Committee and the Affiliate Advisory Board before joining the Board of Directors in 2005. Once I joined the board, I worked on the Strategic Planning and Audit Committees and was Board Chair from 2008 to 2010.

Why did you choose to work with NDSS?

NDSS was very helpful guiding us in the startup of DSANI. My family has always been grateful for the NDSS Buddy Walk and the tremendous value it has provided the Down syndrome community. I believe that NDSS' national leadership is instrumental in improving the lives of people with Down syndrome and their families.

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

Attending the first Buddy Walk Conference in Columbus, Ohio and the first Buddy Walk on Washington Public Policy Conference in DC. I have particularly enjoyed working with the outstanding NDSS staff. Jon Colman leads the best group of non-profit professionals with whom I have ever been associated.

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

While there are many, I believe the single most important issue facing people with Down syndrome is the need to be valued, accepted and included in their local communities. When we are able to overcome the barriers and unfair prejudices that prevent our children from fully participating in society, our other problems will find solutions.



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 beginning of each month.

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

Just Jordan

Corinne Bludworth

Whitefish, Montana


Jordan is my everything.  She makes me laugh out loud daily. Or frustrates me till I'm a cross-eyed lunatic.  But then she hugs me and I forget that she has just filled my $30 bottle of hairspray up with water.  It doesn't matter in the grand scheme of things.  Because she's Jordan, and I love her.


Jordan is 21 years old.  Let me tell you, my girl has done it all!  She's acted in plays, been a girl scout and was the manager of the high school volleyball team.  She was nominated to be the prom queen by the time she was in 5th grade. And she has graduated high school. 


Jordan was asked to prom by a Senior boy in 11th grade.  And then promptly told him that mommy was going to be going on their date with them.  She got her groove on with that nice boy and all of her friends and was tired by 10pm. She kissed him on the cheek and said she would rather ride home with mommy. 


Jordan is my lil Suzie Homemaker.  She's happiest when she is taking care of her family and her "things".  She loves to cook and clean.  Heaven help anyone who comes along, thinking they are going to "fix" what she has already done.  Because it's perfect...of course.


Jordan is a freak for scary movies.  She has seen every vampire flick ever made.  She says she's going to marry David  from the Lost Boys.  Or kiss him.  She's not picky. 


Jordan's biggest wishes in life are to have a "skinny tummy" and be pretty like her peer mentors, and have a job.  I tell her every day how beautiful she is.  She has learned about making "healthy choices" in the food she eats, and she's awesome at reading labels.  We walk everyday, even though she hates it.  But she tells me it's good for us.  She loves to wear "make-ups" (as she calls it) and fix her hair.  She buys all of the "in" clothes... and then wears her elastic waist shorts and jeans pulled up 2" above her belly button.  We will start job hunting for her this summer.  She tells me that she is responsible and a good helper.  She says she can work with me, and I can be her job coach. 


There is so much that I can say about Jordan, so many stories that I could tell.  She has filled our family's lives with happiness and joy.  Like I said...she's my everything. My best friend.  My heart and soul.  She's JUST JORDAN.


Our Adoption Story

Chas and Deb Nevsimal

Kewaskum, Wisconsin


We are in the process of adopting Gianna, who's been blessed with the gift of Down syndrome. We were with Gianna in the NICU for a week after she was born and in the PICU for five days when she, at five months, endured open-heart surgery to correct an AV canal defect, common among babies with Down syndrome. This surgery was necessary and lifesaving. Through it all, Gianna has been an inspiration to us and numerous others, and we're ready for whatever God hands us next. We want to share Gianna's story and her sweet little face with the world in an effort to raise Down syndrome awareness and demonstrate what a true gift those with Down syndrome are to everyone who knows them.

Our adoption was divinely inspired: Having tried more than four years to conceive, we decided to look into adopting. A week and a half after making that decision, we received a phone call from someone who'd been praying on our behalf, Archbishop Timothy Dolan, at the time still in Milwaukee. He called to check in with us, as he did every so often. That is when we told him we were considering adoption. The next day he called again to ask if we'd consider adopting a child with Down syndrome, because it turned out moments after he learned we were going to seek an adoption the very next call he made was to a family who'd decided to give their child up for adoption. God's providence was clearly at work, and the Archbishop discerned that it was God's will to bring us together with Gianna's birthfamily. Still four months pregnant, Gianna's birthmother was urged by her ultrasound doctor to have an abortion, despite her strong pro-life views and a chart that read "No termination!" He never mentioned adoption as an option. Our hearts break thinking Gianna might not have had the chance to grace this world with her gorgeous blue eyes had her mother not been so firmly pro-life. With five boys - one of whom has severe cerebral palsy and requires 24-hour care - another child with special needs was too much for her family, but they thought perhaps this baby could be a blessing for somebody else. We were that somebody else, and Gianna is most certainly the greatest blessing we have ever received. And ours is an open adoption, which means Gianna's birthfamily will continue to play a role in her life, and she in theirs. 


My Great Story

in the News

The My Great Story campaign and its exciting new features have received attention across various media!


Parenting magazine retweeted our post about the campaign on Twitter.

Click here to view the tweet. 





MediaBistro blogged about the new features on their blog, PRNewser.

Click here to read  the post.




MediaBistro also tweeted about the campaign's updates on their PRNewser Twitter feed.

Click here to view the tweet.

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.