National Down Syndrome Society E-Newsletter


June 2011

Chris Burke on Twitter! 



The NDSS Twitter feed (@MyGreatStory) is excited to annouce a new guest tweeter! Actor and NDSS Goodwill Ambassador Chris Burke will be tweeting from the NDSS Twitter account and sharing his insprirational words. Keep an eye out for NDSS tweets with the tag '#ChrisBurkeTweet' so you know when Chris is tweeting!

Click here to follow NDSS (@MyGreatStory) on Twitter.


NDSS National Policy Center Update


  • NDSS called on the Commissioner of the IRS to issue policy guidance clarifying that families may use college savings plans under Section 529 for their child with an intellectual disability enrolled in a postsecondary education program. The letter also requested that the proposed guidance state that any funds in the account will not be held against the student receiving federal assistance such as Medicaid or Supplemental Security Income (SSI). NDSS is a national leader in promoting postsecondary education for students with intellectual disabilities. There are now over 250 postsecondary programs nationwide.

Click here to read the letter.

  • The US Justice Department announced that an agreement was reached under the Americans with Disabilities Act (ADA) with a state-funded private preschool program- (Beginning Montessori Academy, located in Baldwin Park, CA)- after a parent filed a complaint alleging violations of Title III of the ADA when a child with autism was not selected to continue receiving education after having been a student at the school for a period of time.

Under the terms of the settlement agreement, the Montessori Academy will provide children with disabilities an equal opportunity to attend the Montessori Academy and to participate in all programs, services or activities. The school has also agreed to pay $5,000 to the party affected by the policies of the school and make reasonable modifications in policies, practices or procedures.


Click here to read the settlement agreement.

  • Registration opens June 1 for the 2011 State of the Art Conference on Postsecondary Education and Individuals with Intellectual Disabilities. The Conference is sponsored by NDSS and George Mason University and cosponsored by the Administration on Developmental Disabilities and the Association of University Centers on Disabilities. The Conference, to be held November 3 and 4, 2011, will highlight effective practices, research, evaluation and partnerships in postsecondary education.

Click here for the announcement.

  • Recently, a Universal Design for Learning (UDL) report was released that will be critically important to state grassroots efforts to promote UDL implementation. In 2010, the statewide Governmental Affairs Committee in Maryland, which was established in 2008 with the support of NDSS, was successful in the passage of a UDL bill. The bill created a Governor's Task Force of education stakeholders (teachers, a district superintendent, a school board member, a parent and numerous Maryland State Department of Education representatives) to study the effectiveness and feasibility of UDL implementation in the elementary, secondary and higher education systems in Maryland. 

The Maryland UDL Task Force sent its report to the Governor and the legislature on March 31, 2011 and on April 26, 2011. The Maryland State Board of Education unanimously approved the report and its recommendations for the implementation of UDL. It provides a strongly worded endorsement of the central role UDL will play in the improvement of instruction and assessment for all students, including those with significant disabilities. In her letter supporting the report, Maryland Superintendent Nancy Grasmick states: 


"Universal Design for Learning provides us with a research-based framework for teaching and learning that will help us better support student learning and, ultimately, reach our goal of providing a world-class education and students who are well prepared for college and careers in the 21st century."


After completing an extensive literature review and conducting interviews with many education experts across the country, the Maryland UDL Task Force concluded that the implementation of UDL in curriculum and instruction reduced student barriers to learning and resulted in more effective instruction for a broader range of learners while maintaining high achievement expectations for all students.


The Task Force also concluded that it is feasible to incorporate and apply UDL principles into the policies, practices, and curriculum of the elementary, secondary, postsecondary and higher education systems in Maryland, including the policies and practices regarding curriculum development; the evaluation, selection, and design of textbooks and other instructional materials; the purchase and use of technology for instructional purposes; teacher preparation and staff development; the development of classroom, school system, and statewide assessments; and State grants.


The Task Force developed a powerful plan for building stakeholder awareness of UDL and capacity for UDL implementation at the state and local levels. The Report sets forth very detailed recommendations for the Maryland State Board of Education, the Maryland State Department of Education, local school systems, schools and Maryland Institutions of Higher Education to incorporate UDL principles into their decision-making and planning processes. One of the recommendations for the State Board of Education is for the Board to request a steering committee comprised of pre-kindergarten-16 (grades 13-16 are higher education) education stakeholders, including parents, to support the advancement of UDL integration in the areas of instructional materials and technology, professional development, and curriculum and instruction.


Click here to view the full text of the Maryland UDL Task Force report, "A Route for Every Learner."


In addition, affiliates advocating for UDL and other causes in their State should look over a case study detailing the steps taken by the Maryland Down Syndrome Advocacy Coalition to pass the UDL bill.


Click here to view the case study.

Click here to view the appendix of documents for that case study. 

  • Click here to view an interesting story about students with intellectual disabilities using various apps for iPads.

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.

Buddy Walk® News



Buddy Walk® Conference Recap


On Saturday, April 30, NDSS hosted the third National Buddy Walk® Conference in San Diego, California. A very special thank you goes out to the Down Syndrome Association of San Diego for co-sponsoring this important event with us. The Conference was attended by 40 people representing 11 different groups from seven states. The individuals who traveled the farthest were Dennis and Sharonlee Diehl from Rehoboth Beach Boardwalk Buddy Walk in Delaware, 2,831 miles from the event.


The Conference consisted of four breakout sessions that included such topics as: the pros and cons of registration fees, communicating effectively with your participants, increasing event participation and Buddy Walk fundraising with Blackbaud Friends asking Friends (led by Blackbaud's Kim Romaszewski, Amy Braiterman and Ian Gruber) and what is holding Walks back from reaching their full potential.


During these presentations, NDSS staff members were joined by various Walk organizers who have proven successful in each specific area. NDSS thanks the following people for their contributions to the third National Buddy Walk Conference:


Mary Brown, Heart of Illinois Down Syndrome Association
Joyce Clark, Down Syndrome Association of San Diego
Dennis Diehl, Rehoboth Beach Boardwalk Buddy Walk
Kacy Hensley, Down Syndrome Association of Central Oklahoma
Erin Paul, Down Syndrome Association of Tulsa

The Conference came to a close after nearly an hour of round table discussions, when organizers had a chance to network and discuss best practices with other groups that share similar successes, ideas, growing pains and concerns.

The Conference also included a welcome reception sponsored by the Down Syndrome Association of San Diego, and announcements about our newest national partner, Down Syndrome Footprint, who will be donating a gift basket to each approved Buddy Walk as well as providing fundraising opportunities for your organization. The event also featured details about the free gift from our returning national partner Signing Time!, who will once again be donating a DVD set valued at $75 to each approved Buddy Walk (stay tuned for more information about each of these opportunities).


Click here for more information about Down Syndrome Footprint.

Click here for more information about Signing Time!


At the awards ceremony honoring several groups that stood out from the pack in 2010, certificates were presented to the Down Syndrome Connection of the Bay Area for celebrating the acheivements of individuals with Down syndrome at their Buddy Walk, the Down Syndrome Network of Northern Nevada for their creative use of social media in their Buddy Walk, and the Down Syndrome Association of Tulsa for incorporating self-advocates into their Buddy Walk.


If you'd like to receive access to conference presentations, it's not too late to register as a virtual attendee.


Click here to register.

Thank you for helping us to make the third annual National Buddy Walk Conference an overwhelming success! We look forward to seeing you in 2012! 


Buddy Walk Partner Spotlight


Earlier this year, NDSS received an email from Tracy McCaffrey, owner and creative designer of Mint Graphics, a graphic design firm based in New York City. Tracy has participated in the NYC Buddy Walk for the past three years, walking with her five year old niece Kelly. Tracy wanted to know if there was any way that she could get more involved with NDSS using her design background. We were pleased to offer her the opportunity to create a Buddy Walk ad for a phone book in Alabama offered to us by one of our national partners, Knology. Tracy was kind enough to donate her time to create the phone book ad as well as the 2011 Buddy Walk poster, which she is currently designing.

NDSS thanks Tracy for her desire to help and her commitment to the Down syndrome community. Click here to learn more about Tracy and see other samples of her work.

Click here to learn more about Knology.


Buddy Walk Bracelets


Are you looking for a unique gift for a team captain or top fundraiser, or are you looking for a new way to raise awareness about the Buddy Walk? NDSS encourages you to check out these Buddy Walk bracelets, designed by a motivated group of 8th grade students from The Woodlands, Texas, as part of a program called "Destination Imagination." Since all the members of the group have either a friend or family member with Down syndrome, they chose to raise awareness about the Buddy Walk for their community outreach project. In addition to raising awareness, they decided to raise money for NDSS by designing these bracelets. The bracelets are sold separately for $10 each.

Click here for more information or to purchase the bracelets.


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.



New York City Buddy Walk®


New York City Buddy Walk® Registration is Now Open


What: 17th New York City Buddy Walk

When: Saturday, September 24, 2011

Where: The Great Hill in beautiful Central Park, 106th Street and Central Park West

Why: Join more than 2,000 supporters in Central Park to honor and celebrate the many abilities of people with Down syndrome!

How: Registration Is Now Open!


Click here to learn more about the event and to register.


If you participated in 2010 you can use the same user name and password you created last year. You will have access to your address book, donor history and team roster (if you were a team captain).


Click here if you forgot your username and password.


Times Square Video is Accepting Submissions


NDSS invites you to give us your best shot by entering the Times Square Video Contest. The video, which showcases individuals with Down syndrome from all over the world, will air in the heart of Times Square on September 24, 2011 at 10:15am ET prior to the New York City Buddy Walk.


Each year, NDSS receives thousands of photo submissions for the Times Square Video Contest. The winning photographs represent the diversity of the Down syndrome community. ONE photo per individual can be submitted to the contest. If you send more than one photo, NDSS will only use the first submission.

All individuals in the photo sent to NDSS must sign off on a consent form to be considered for the video. If more than one person is in the photo, please indicate which individual has Down syndrome.

Click here to submit a photo and consent form online for the 2011 Times Square Video Contest.

If you prefer to send a photo and consent form by mail, please use following address:

(Click here to download a copy of the consent form.)


Attn: Call for Photos
666 Broadway,
New York, NY 10012

The deadline for submitting a photo is July 15, 2011 at 11:59pm ET.

Final photo selection will take place on July 27, 2011 by an independent third party and winners will be contacted by a representative from NDSS via email or telephone starting the week of August 1, 2011. We will notify you ONLY if we accept your photograph for the video, and we are unable to return any photos.

Affiliates and others interested in spreading the word can click here to download the 2011 Times Square Video flyer , which has all of the information necessary to encourage members and friends to participate!


NDSS 15th Annual Golf Outing Raises Nearly $250,000!


At the NDSS 15th Annual Golf Outing on May 23, 130 golfers gathered together at Canoe Brook Country Club in Summit, New Jersey to enjoy a great day on the green and to honor Wilson H. Madden, Jr. The weather was less than perfect, but these amazing supporters showed up with smiles on their faces and clubs in their hands. At the evening reception, guests were welcomed by Mitch and Max Rubin, a father/son duo who share a love of golf and good humor. Bart Goodwin, co-founder of the NDSS Golf Outing, introduced the lovely Catherine Madden, who presented this year's honoree award to her father, Wilson. Separate from his hard work on the Golf Outing committee, Wilson is a tremendous advocate for a fair and equal education for people with Down syndrome in the New York City public schools.

Back by popular demand, Auctioneer and NDSS Board Member Terry Clancy had the crowd roaring (and donating) during the live auction. Of the nearly $250,000 that was contributed to this event, more than $50,000 was raised during the auction.

NDSS thanks all sponsors and participants that helped to make this event successful and congratulates Wilson on a well-deserved honor.

Click here to view select photos from the event.



NDSS Renews Partnership with PinMart




PinMart, longtime supporter of NDSS, is our official provider of Down syndrome awareness products. PinMart is a family owned and operated online business located just outside Chicago. PinMart carries an extensive line of products and for more than five years, 5% of annual sales from Down syndrome awareness products has been donated to NDSS.

This past year, PinMart donated 7% from sales of all Down syndrome awareness products and 50% from the sales that were made by the shoppers that clicked through from Shop NDSS.

PinMart also extends a discount to all affiliates and individuals who enter the promo code NDSS at checkout. Entering the PinMart site from the NDSS website will automatically apply a 10% off promotion code to your shopping cart.

Click here to visit Shop NDSS.

Vote for NDSS with Vivint Gives Back





NDSS has been nominated to participate in the 2011 Vivint Gives Back Project. The Vivint Gives Back Project is a program run by Vivint, Inc, one of the largest home automation companies in North America. This is an opportunity for Facebook users to help Vivint support charities that are doing good work in neighborhoods and communities across the United States. Through this project, the public decides which charities are awarded a total of $1.25 million.

Between now and June 11, 2011, anyone with a Facebook account in North America can add an endorsement for National Down Syndrome Society on a daily basis.

The top 20 charities in each of the five regions with the most endorsements will make it to the voting phase from June 14 through August 27, 2011. Throughout this phase of the contest, Vivant will announce matching periods. During these periods, participants can contribute up to $50 per person and Vivint will match contributions from participants dollar for dollar.

Within eight weeks of the end of the competition, the winners will be announced. The charity that receives the most overall votes will receive $250,000. The next top-voted charity in each region will receive $100,000. 


Please help NDSS become a top charity by endorsing us and voting often.


Click here to vote for NDSS. 

Enrichment Fund Application Available

2011 Joshua O'Neill and Zeshan Tabani Enrichment Fund Continues to Accept Applications

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: Tiffany Barfield


We are pleased to introduce Tiffany Barfield as the NDSS featured board member of the month.


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


I had a sister who with partial trisomy 13, so I have always been aware of the special needs community and the precious gift they are!


How did you become a leader at NDSS? 


I took the non-profit board clearing house course through the New York Jr. League and a flyer was at our board recruitment event. I am lucky to know Jim Nussle so I was able to share with him my interest and passion in making a difference, but more importantly within a community that I have been involved with all of my life. 


Why did you choose to work with NDSS?


Having had a sister with special needs, I know how special the people are who surround the community so I wanted to find a way to give back and that is why I chose this board.


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


The Buddy Walk and the NDSS Gala. The Taishoffs are true inspirations!


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


How to engage the siblings in an understanding of what their sister/brother will face in the world. What are the next steps for families post high school?



PR News Nonprofit PR Awards



NDSS congratulates the My Great Story public awareness campaign on being recognized by PR News as one of four national campaigns to receive an Honorable Mention as the Best Social Awareness Campaign in 2010. NDSS and My Great Story received the award on May 18 in Washington D.C. at the National Press Club at the Annual PR News Nonprofit Award Ceremony.

NDSS would like to extend a special thank you to all of those who have shared, and continue to share, their stories and to those who vote, comment, blog, post, tweet and retweet about the campaign. The My Great Story campaign's success is owed to those who participate daily, and spread the word so others can join the campaign as well. Thanks for your continued support! 

My Great Story Campaign Monthly Contest




Congratulations to Kurt Kondrich, Upper St. Clair, PA, on winning of the My Great Story campaign monthly contest! Kurt's story received the most votes in May, and he will be receiving a $50 gift certificate to

This month, the author of the story with the most votes will win a Sheaffer Intensity Ballpoint Carbon Fiber Pen (retail $55). Share your story and spread the word throughout June to win this prize!

Click here to share your story.

Sheaffer has delivered elegant and original products of the highest quality since its humble incorporation in 1913 in Fort Madison, Iowa. Nearly a century later, we continue to offer innovative, reliable and stylish writing instruments to generation after generation. A Sheaffer® writing instrument offers its owner originality, quality and prestige- making Sheaffer®, The Gift That Matters.

My Great Story: Father's Day Section


Beginning in May, all were invited to share stories about the dads in their lives in the My Great Story Father's Day section. Congratulations to Debbie Morris, whose story received the most votes in the Father's Day section!


A Special Bond

Debbie Morris
Brooklyn, New York


Our daughter Sophia was born 2 weeks early; clearly in a rush to meet us! We had no idea that she had Down syndrome - although I did go for amnio, the doctor was unable to break my membrane (which is rare) and we could see our little angel moving her hand toward where the needle was trying to enter, as if she were swiping it away. At every sonogram, Sophia always showed the back of her, never the front. No matter what the technician did, she refused to turn. (This feistiness would prove to be one of her key character traits!) We were told that it was important to get a frontal view, in part to see if there were any Down syndrome markers. When she finally did turn, at 27 weeks, there was a marker - two echogenic foci on her heart. We were unfazed.


When Sophia was born 11 weeks later, she came very quickly. Once on the warming tray, my husband, her wonderful father, Andrew, went over to peer at our miracle. He came back over to me and told me that he thought she had Down syndrome. When I asked him why he thought that, he said "Because she opened up her eyes and told me her secret."

To this day, they are bosom buddies, always sharing a giggle and a laugh together. She worships him, and he her. His pride in her and everything she does is palpable; their mutual love for each other is a joyous thing to behold. How truly blessed I am.



One More Month of the My Great Story Father's Day Section!




Father's Day is in just a few weeks, and the newest My Great Story holiday section is 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!


This month, the top voted story in the Father's Day section is featured above, so be sure to share your story and spread the word to see your Father's Day story featured here next month!


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.

Chloe Reads to the Governor of PA

Kurt Kondrich

Upper St. Clair, PA


During the Fall of 2010 Chloe Kondrich met with soon to be Governor of PA Tom Corbett to show the ABILITIES of a 7 year old child with Down syndrome. Chloe told Governor Corbett about the neighborhood elementary school she attends, and she read a book to him. Chloe also autographed a copy of the book "Making a Case for Life" for the Governor, and this book features Chloe on the cover and contains a chapter about her advocacy work. Governor Corbett was very impressed by Chloe's ABILTIES, and he has become a strong supporter of Early Intervention and Early Childhood Education programs in Pennsylvania that set the foundation for a lifetime of success. 


The second and third place stories for this month have each been 

featured in previous e-newsletters.

Click here to read Evan, The Actor, by Evan Sneider from Cape Cod, Massachusetts.

Click here to read Deon 'The Miracle' Child, by Adrian Greaves Fort Lauderdale, Florida.


Our Son, Our HERO

Tom Lambke
Chandler, Arizona


Karen and I had been married over four years and were itching to start our family. Finally, on December 3, 1981, after one miscarriage, our son Bryan was born. As I witnessed this miracle in the delivery room, I noticed our baby's eyes looked different. I felt like someone had punched me in the stomach as I realized our baby boy had Down syndrome. Incredibly, my first selfish thought was, "Now who will I play baseball with?" Karen's oldest sister also had a baby boy with Down syndrome. But Patrick had passed away the previous year due to a heart condition. Obviously, we did not have much experience with individuals with a disability, so Karen and I decided to raise Bryan as best as we could. To us that meant taking him with us everywhere we went. Bryan experienced a lot his first few years. When he was just six months old, we flew from Illinois to California to visit my brother, Ken. He went to parties and concerts. Then, when Bryan was ten months old, his doctor detected a heart murmur.


Heart surgery is a traumatic event for anyone to experience, but Bryan displayed strength and courage beyond his young age. The hole in his heart was repaired with a Teflon patch which would grow with his heart. After a five week stay, including his first birthday in intensive care, our beautiful and now-healthy son was allowed to come home. Little did we know that would be the last moment of sadness that Bryan would bring to our lives for the next twenty-six years.


As we sailed through life, adding our daughter, Shauna, we discovered a world full of prejudices and stereotypes. We encountered many people who did not view someone with a disability as an equal. There were still many who looked at Bryan with sorrow and at us with sympathy. We had some frustrating years, including many stages of Bryan's education, but we used his personality to open doors socially. We realized we had become advocates for Bryan and others with disabilities by simply doing what we thought was best for him.


Click here to continue reading Tom's story.


My Great Story

in the Media

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


In Cedar Rapids, IA, KWWL aired a segment with Suzanne Revers and her son, Andy Becker, about their submission to the My Great Story campaign.   

Click here to view the segment.




In Omaha, NE, The Morning Blend featured guests Mary McHale, of the Down Syndrome Alliance of the Midlands, and her son Daniel about Mary's submission to My Great Story.

Click here to view the segment.   





In Orange County, CA, The OC Register ran Jennifer Hinds' submission to the My Great Story Mother's Day section.

Click here to read the article.   




In Scranton, PA, Kelly Carey, of Parents of Down Syndrome of Northeast Pennsylvania, joined My Great Story author Kathleen Haikes on Northeast Current to discuss Kathleen's participation in the campaign.  






In Syracuse, NY, the Eagle Bulletin covered Talina Jones' story about her son, Tajee, for the My Great Story campaign.

Click here to read the article.  





In Tulsa, OK, 2News Midday spoke with Alana Kennon, of the Down Syndrome Association of Tulsa, and Kaley Durland about the stories they've shared with the campaign.






Associated Content ran the press release for the Mother's Day section of My Great Story.

Click here to read the release.



The Support for Special Needs blog featured the My Great Story Mother's Day section in honor of the day.

Click here to read the post.  



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








Suzanne Holst Revers

Life's Little Surprises


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.