National Down Syndrome Society E-Newsletter


October 2011



17th Annual New York City Buddy Walk® and 

Times Square Video Presentation     



Each Buddy Walk® so beautifully represents the Down syndrome community - it is diverse, it is friendly, is it energetic, and it is welcoming. NDSS encourages all of you to bring the spirit of the Buddy Walk deeper into your community, where you can play an even more integral role in creating a culture that fully accepts and includes all people with Down syndrome.


It is with great pleasure and gratitude that we thank all supporters of the 17th Annual New York City Buddy Walk. On September 24, more than 2,000 people joined NDSS on the Great Hill in Central Park to raise awareness and funds for programs that benefit people with Down syndrome and their families. Almost $200,000 was raised from over 3,100 donors and supporters.

Highlights of the day included an inspiring opening ceremony emceed by Chris Wragge, Co-Anchor of CBS The Early Show and CBS2 News. The ceremony featured NDSS Goodwill Ambassador Chris Burke, Self-Advocate Ambassador Katie O'Brien, Dan Piper Award recipient Matt Porter, and a speech from Monica Walters Martinez and David Martinez, the stars of the documentary Monica & David. After the Walk, Rachel Coleman's popular Signing Time performance was followed by a lively dance party and a musical set by Chris Burke with John & Joe DeMasi.

Additional thanks goes out to the 500 plus people from far and wide who joined us for the annual Times Square Video presentation. Your cheers were heard throughout Midtown Manhattan! For those who were unable to join us, we invite you to visit the NDSS website, where the 2011 Times Square Video will be visible for an entire year. Copies of the video are also available for purchase. Click here to watch the video and here for the order form.  


NDSS National Policy Center Update


-  Meetings with members of the "Super Committee," created by Congress to work out a plan for deficit reduction, are ongoing.  To read more about the conversations NDSS Policy Center staff are having with staff of members of the House and Senate named to the "Super Committee," click here.  


-  NDSS worked closely with our affiliates in Indiana to develop a broad coalition of organizations working together to promote postsecondary education for individuals with developmental disabilities. On September 29, the Indiana Postsecondary Education Coalition hosted a webinar for higher education leadership and special educators. NDSS staff provided an overview of the national perspective on postsecondary education. Click here to learn more about the coalition.  


-  Don't miss your chance to register for the 2011 State of the Art Conference on Postsecondary Education and Individuals with Intellectual Disabilities that will take place in Fairfax, Virginia on November 3 and 4. The Conference, sponsored by NDSS and the George Mason University, and co-sponsored by government agencies and national organizations, will feature leading experts on postsecondary education, including college and university faculty, researchers, federal officials, parents and self-advocates. Click here for more information and to register.  


At the beginning of August, the Department of Health & Human Services (HHS) announced that (under new policies issued by private insurers as of August 2012) certain services would have to be provided to all women at no cost. This is part of the Patient Protection and Affordable Care Act's (PPACA) provision of preventive services. Under the current language of the regulation, which relies on a report by the Institute of Medicine (IOM), all women are to be provided at no cost a well-woman visit, which includes prenatal testing for genetic conditions. While we agree that all women should have equal access to well-women visits; unfortunately, the regulation fails to also require coverage of providing accurate, up-to-date information about Down syndrome with a diagnosis and referral to national and local support organizations, as currently provided for by medical professional guidelines.  


NDSS has sent out an action alert asking for affiliate members to comment on the fact that the new regulation does not require insurance companies to cover the cost of providing accurate information about Down syndrome to women who get a prenatal diagnosis.  Since 2008, the Prenatally & Postnatally Diagnosed Conditions Awareness Act (commonly referred to as the Kennedy-Brownback Act after its two lead sponsors in the Senate), has been the law of the land. The Act recognizes a need for accurate information about prenatal testing and the tested-for condition, an adoption registry, support for parent support organizations and funding. The Act has yet to receive any appropriations or be fully funded, but NDSS continues to pursue public and private funding for the law. Click here to view the alert and take action.   


-  In September, NDSS became involved in a national effort to respond to an informal guidance from the U.S. Office of Special Education Programs (OSEP) that could result in local special education funding being diminished indefinitely. The guidance would allow districts that have violated IDEA by lowering special education funding, to use that lower amount as the basis for what they are required to provide in subsequent years. Imagine applying this same result to your own life: what would happen if you violated your lease by paying only half of your rent this month and then the next month you expected the rent to be changed to the lower amount indefinitely? The landlord would never let you be enriched by a violation in this way. You would have to go back to paying the rent you owed before you violated the lease. Our goal is to convince the U.S. Department of Education to rescind this guidance. Click here for information and to take action.


-  The White House has been circulating a U.S. Department of Labor announcement indicating $21,166,560 in awards for seven states under the Disability Employment Initiative to improve education, training, and employment opportunities and outcomes for youth and adults who are unemployed, underemployed and/or receiving Social Security disability benefits. The initiative is jointly funded and administered by the department's Employment and Training Administration and its Office of Disability Employment Policy.  Click here to read more about the initiative.


-  On September 23, the U.S. Department of Education announced a flexibility program to allow states to waive certain key accountability and funding allocation requirements of the Elementary and Secondary Education Act (ESEA-formerly referred to as NCLB, the No Child Left Behind Act). In exchange for these waivers, states must provide certain assurances that are supposed to improve academic achievement for all students. It is expected that most states will submit a Flexibility Request. NDSS and other disability organizations are concerned that this flexibility program will not adequately protect the rights of students with disabilities.


NDSS is in the process of developing a list of recommended clarifications to send to the Department of Education in an effort to put this protection in place. However, it is still critically important to be involved in the process at the state level. States are required to consult with organizations representing students with disabilities as the Flexibility Request is being developed. NDSS statewide governmental affairs committees and affiliates should contact the State Department of Education directly, or join with other groups, and ask to be included in that consultation. The first submission deadline is November 14, so states will be moving quickly with their Flexibility Requests. If your organization, or an organization with which you are collaborating, will be providing input, please contact Ricki Sabia, NDSS National Policy Center Associate Director, at for more information about our specific concerns for students with Down syndrome. Click here for additional details about the ESEA Flexibility Program. 



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.


Revised Health Care Guidelines for Ages 0-21

Does your son or daughter with Down syndrome need a sleep study? Do you know what their hemoglobin value was this past year? The health care guidelines for people with Down syndrome, ages 0-21, have changed this year, and NDSS is committed to making sure that you know what questions to ask in order to maximize your son's or daughter's health. 


The NDSS Clinical Advisory Board, composed of the topic health care experts on Down syndrome, have digested the new health care guidelines from the American Academy of Pediatrics into simple checklists just for parents. "Parents need to take charge of their son's or daughter's health," says Dr. Brian Skotko, Chair of the NDSS Clinical Advisory Board. "I encourage every parent to print these checklists and have a discussion with their child's pediatrician during their next visit." 


Click here to find these parent checklists.


Support NDSS Through Twibbon


Celebrate Down Syndrome Awareness Month with the NDSS Twibbon!


Over 350 people have added the NDSS pic-badge to their profile pictures on Facebook or Twitter! By adding the badge, also known as a Twibbon, they are supporting NDSS and raising awareness for people with Down syndrome to all who see their profile pictures.  


Click here to view a selection of recent supporters of the NDSS Twibbon and to add it to your profile picture.

Buddy Walk® News

Most Buddy Walks® take place in and around October in honor of Down Syndrome Awareness Month! To learn more about the Buddy Walk and find one in your area visit


Support Shout Out

NDSS and the Buddy Walk team would like to extend our sympathies and those of the entire Buddy Walk community to all of the Walks that were affected this year by natural disasters. The New York City location in Central Park was hit a couple of years ago by a bad storm, and we anxiously awaited to see if we could still hold our event there. We were fortunate that they were able to clean up enough of the damage to allow us to hold our Walk, so we can fully appreciate that this is a very difficult time for you, and recognize that some of you were not as fortunate. We want you to know that we are here to support you in any way we can, and to let you know that Walk organizations in the community have reached out to us to offer their support as well! We know that with your resilience you will be back stronger than ever in 2012, and we will be here to support you every step of the way!


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. 


To keep up-to-date on all things Buddy Walk and to hear about new posts on the Buddy Walk blog, follow NDSS Buddy Walk on Facebook and Twitter


Dan Piper Award Recipient 



 Congratulations to Matt Porter on Receiving the 

2011 Dan Piper Award!   


The Dan Piper Award is presented to someone with Down syndrome who, through everyday activities, brings about a greater public awareness and understanding of people with Down syndrome. By living his or her dreams, this person is an advocate for themselves and others with Down syndrome. This year's award was presented to Matt Porter by NDSS Goodwill Ambassador Chris Burke as part of the 2011 New York City Buddy Walk's opening ceremony.


Matt, or "Matt Porter" to everyone who knows him, is from Happy Valley, Pennsylvania, near Penn State University, where he has taken several classes. He is this sixth child in a family of 14 children and his brothers and sisters all agree that Matt is a big part of what makes their family special. According to his local affiliate, the Centre County Down Syndrome Society, Matt is "a dedicated friend, brother, son, volunteer, employee, and advocate, with an infectious smile and a winning, go-get-'em attitude. He inspires members of his community to live each day to serve others and make people happy." Matt's personality and attitude towards life embody the spirit of the Dan Piper Award.

Matt and his brother, Andy, recently spent some time on Capitol Hill, advocating for individuals with Down syndrome as part of the NDSS Buddy Walk® on Washington. As a result of their tremendous impact, NDSS featured the Porter brothers in our semiannual fundraising letter. Click here to read our summer 2011 appeal letter featuring Matt and Andy Porter. 


Click here to read more about the Dan Piper Award, its namesake and past recipients.

My Great Story Buddy Walk Section! 




The Buddy Walk® is a great time for bringing families, friends and communities together to raise awareness for the acceptance and inclusion of people with Down syndrome. The My Great Story campaign's Buddy Walk section is the perfect way to share your Buddy Walk experience with other walkers and those who couldn't make it in person.


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


Buddy Walk Organizers:  

Click here to download the My Great Story Buddy Walk flyer to distribute at your Walk and encourage your participants to share their stories!  

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.  

With Hope Comes Love


Hope and Samantha

Samantha Luedecke is 14 years old. If our world was filled with teens like Samantha, the NDSS mission would be fulfilled. In a small town near Richmond, Virginia, she and her best friend, Kerri Anderson, are making the value, acceptance and inclusion of people with Down syndrome a top priority. Together, they co-founded an awareness and fundraising campaign called With Hope Comes Love.

Samantha is the type of teen who signs the bottom of her emails with the following quote: "There is no such thing as a disability, only many different kinds of abilities." She is a part of a club at her local YMCA called Teen Leaders Club - a group that provides teens ages 13-18 with knowledge, training, communication skills, and valuable team-building experiences through volunteering in an effort to train them to better serve their community and to make a positive impact for present and future generations.

Samantha's mother is a Special Education teacher, and as a young child, Samantha looked forward to helping out in the classroom. She felt the strongest connection with Hope, a student who has Down syndrome, and they have been in touch for years. Hope is the inspiration for this campaign. When we asked Samantha to describe her relationship with Hope, she said, "The first time I met Hope I had no clue that she would be the one to change my life forever. As soon as I walked into my mom's classroom on field day, she was the first one to run and give me the biggest hug I have ever received. All volunteers were partnered up with the children in the class to be able to help them throughout field day and I got Hope! Throughout the whole day she did every single event there and had the best time. Her smile and positive outlook on everything and everyone was the most amazing thing to see. That day was my birthday, and I'll never know if she knew this, but that was the best birthday I have ever had. Ever since that day I have been given the chance to be a part of Hope's life, and she has been even a bigger part in mine."

Kerri loved hearing about Hope from her best friend Samantha and knew she needed to get involved. They established a mission and goals, and started their campaign by making a flyer that they put around town. Their message is simple: "Times are changing and we need to spread awareness that people with Down syndrome are capable of contributing to society. We want to live in a world where people just like Hope are given the same opportunities and equal acceptance from everyone!" 

Samantha and Kerri have planned a series of community and school events that will raise awareness about Down syndrome. They are also fundraising for the cause and have raised their first $125 towards their $1,000 goal. They are more motivated than ever! 

Please join us in recognizing the tremendous motivation and commitment of the co-founders of With Hope Comes Love.

Click here to view Samantha and Kerri's fundraising page.
Click here to learn more about planning your own fundraiser in honor of a loved one. 


Fundraising Tips for Down Syndrome Awareness Month

This season, especially this month, is filled with positive messages about people with Down syndrome and those who love and support them. If you find yourself inspired by these messages and you want to do something extra for the community, here are a few ways you can make an impact.  


1) If you are a social media maven, why not post or tweet a link to NDSS or your local Down syndrome organization and encourage your contacts to donate to the cause? If you are a blogger, post a message or two in October about Down syndrome and include a donate link.
2) Teach your children! Bring an activity to your child's classroom, youth group or sports team that raises awareness about people with Down syndrome, and then encourage them to choose a relevant cause that they can fundraise for throughout the year.
3) If you're having a birthday party, wedding or other milestone event that usually calls for gifts, add a charity to your invitation or announcement and invite your guests to donate to the cause in lieu of gifts.
4) Join Team NDSS or another endurance athlete program in your area that connects your physical training with a fundraising goal. Click here for more information about Team NDSS.
5) Get creative! Somebody came up with the idea for those paper shapes that stores and banks sell for $1. Maybe you are the key to the next big fundraising idea?
Share your ideas and success stories with us. Please email them to Pam Sandonato, Vice President of Development, at Throughout the month of October we will be posting all kinds of tips and ideas on Facebook and Twitter.



NDSS Tribute Cards: New Designs are Here!

In August, we announced that artist Annie Clancy went back the drawing board to bring us five new designs for the NDSS Tribute Cards. For those who loved her first series of designs, you are going to be even more impressed with these. Annie's style has become more sophisticated and more detail oriented, and the colors of these cards are incredibly vibrant.   


In support of Down Syndrome Awareness Month, consider sending these cards to commemorate a special event or honor a community leader. Each time you send a card to one of your personal contacts, you are helping NDSS raise awareness for people with Down syndrome.
Click here to check out the new tribute card designs and put in an order.

Richard Peck Brings Home a Win for Team NDSS!


On September 24, Team NDSS member Richard Peck participated in the ChesapeakeMan Endurance Festival in Cambridge, Maryland. 


His event, the Skipjack 75.2 Triathlon, included a 1.2 mile swim course, a 64-mile bike course and a 10-mile run.


We are excited to announce that Richard won the male 45-49 year old division and came in 15th place overall! What a way to honor his brother Chris, who has Down syndrome. 


We first wrote about Richard in February 2010, when he attended the Buddy Walk® on Washington and joined Team NDSS as our first Ironman athlete. Since that time he has participated in more than 10 endurance events wearing NDSS gear and has raised over $10,000. In addition to his fundraising and awareness efforts, he also continues to participate in NDSS advocacy programs.


Thank you and congratulations, Richard!


Click here to view Richard Peck's fundraising page.
Click here to learn more about the NDSS Endurance Athlete program.

Scholar Spotlight 


Each year NDSS awards postsecondary scholarships to students with Down syndrome through the Joshua O'Neill and Zeshan 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 Joshua O'Neill Zeshan Tabani Enrichment Fund were invited to write about their experiences as students.


Andy and his tutor, also named Andy

This month's Spotlight is on Andy Strunk of Louisville, Kentucky. Andy attends Jefferson Community College in Louisville and this semester he is taking a class called First Aid and Emergency Care.  When he's not swimming or horsing around with his nephew, Andy plays handbells and volunteers at his church.


Andy told NDSS, "I am so very happy I got a scholarship. I plan to use the scholarship on classes I take at Jefferson Community College." He continued, "I have to have help in my class but I am learning a lot. I am also going to make a first aid kit and present it in class. I am learning CPR and first aid. The tests are very hard so I have decided to audit the class and not take it for credit." He continues, "I am enjoying my college class. I enjoy being with other college students. I love my teacher Ms. Angela. I enjoy practicing CPR and emergencies.  We have learned how to do dressings and the Heimlich too. I go on Thursdays and Tuesdays to class. I have a mentor in my class- her name is Lindsey Riley.  She helps me take notes and practice."


NDSS congratulates Andy on his hard work this semester. He 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 Joshua O'Neill and Zeshan Tabani Enrichment Fund.  


My Great Story of the Month Contest 


Congratulations to Michael Cardella of Greenwich, New York on winning of the My Great Story of the Month Contest! Michael's story received the most votes in September and he will be receiving the kai fragrance gift bag.

This month, the author of the story with the most votes will win a beautiful collection of B. toys, including the Pop-Arty, Spinaroos, Critter Clinic, and Fish & Splish! Share your story and spread the word throughout October to win this prize!

Click here to share your story.

About B. toys: Last year, family-run manufacturer Battat introduced the world to their innovative new toy line with the quirky one-letter name, B. The funky and fashionable B. was created with a passion for open-ended play, a belief that beauty doesn't have to stop at the playroom door and a desire to be the voice to children everywhere that says: Just B. Just you. B. you. Fourteen B. toys have been highly rated by Able Play™ for children with special needs. And B.'s commitment to children doesn't stop there. All B. packages are made from recycled and recyclable materials to protect the world our children will inherit. (Some B. toys omit packaging altogether, instead coming in gorgeous reusable bags.) For every B. toy sold, 10˘ goes to Free The Children, the world's largest network of children helping children.
Click here to find out more about B. 

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

God Don't Make Junk! 

Michael Cardella 

Greenwich, New York


 I Love My Life, Because, "God Don't Make Junk!"

When I was born in 1978, doctors told my parents to put me in an institution because I have Down syndrome. My parents didn't listen to the doctors. They took me home and loved me because they knew I was a gift from God. My parents know, "God don't make junk!" I know it too!

I have a great life. I live and work in my community. I have three part-time paid jobs: Applebee's Restaurant (8 years), Hannaford Grocery (2 years), and I have been a speaker for the New York State Self Advocacy Speakers' Bureau (over 5 years). When I speak about my life I tell people I only want to work part-time because, "I don't want work to interfere with my life." People who hear me want my life. That's because I have a really good life!

I have a self-determination plan. With self-determination (CSS) I hire my support staff. I am learning things I will need to live on my own, and will soon live in an apartment next to my parent's home, where I live now. This is my choice: I want to stay connected to my family and Church community, and have a place of my own too. I don't want to live with strangers or ever live in group homes.

I love to travel for speaking and vacations. (I really like hotel life a lot.) I attend the Potential Unlimited Music Institute where I play drums, congas, dance, and I am a member of their company troupe, where we will perform for money someday.

I have a spiritual life. The most important thing in my life is my relationship with Jesus and our local fellowship, New Covenant Community. We live near our church and I am involved in all church activities.

I am a twice-certified Toastmaster (international speaking organization that takes a lot of hard work to get certified), and I am Sergeant-at-Arms for our club. I love being in our Toastmasters club in Saratoga and they love me. Toastmasters helps me be a better public speaker.

Sometimes my mother and I are a team and we will speak together. My mother is an advocate and I am a self-advocate. I use PowerPoint when I speak. My favorite job is speaking and I do conferences and workshops all around the country. I also do keynotes, once in Guatemala! I speak at the National Down Syndrome Conferences almost every year and I also do workshops for other self advocates. Sometimes I do a sushi-making workshop called "Maki with Michael." A photo of me doing that workshop appeared on the NDSS Times Square video in 2009, and I went to New York City to see it live!

When I speak at conferences, I tell people about my awesome and wonderful life. I tell people that just because I have Down syndrome doesn't mean I can't do things. I can do a lot, because "God don't make junk!" 


Chloe Meets Congresswoman McMorris Rodgers and Goes to the Floor of the House

Kurt Kondrich

Upper St. Clair, Pennsylvania


On Monday, August 1, 2011 Chloe Kondrich went to the U.S. Capitol and met with Congresswoman Cathy McMorris Rodgers who is the founder and co-chair of the Congressional Down Syndrome Caucus.  It was an extremely busy and historical day at the Capitol, and Congresswoman McMorris Rodgers spent over one hour with Chloe and our family.  Chloe signed and presented "Cathy" with a copy of the book "Making a Case for Life" which Chloe is featured on and in, and she also gave the Congresswoman a copy of "Facing Life Head On - Going to Bat for Down Syndrome" the national TV episode Chloe starred in.  Congresswoman McMorris Rodgers then took Chloe onto the floor of the U.S. House of Representatives and let many members of Congress see the abilities and beauty of a child with Down syndrome.  The day was truly magical as we watched from the House gallery, and we are all very fortunate and blessed to have Congresswoman McMorris Rodgers' leadership and voice in Washington, D.C.



My Great Story Print and Digital PSA Placements this Month

In honor of Down Syndrome Awareness Month, the My Great Story campaign will receive prominent visibility through exciting outlets:


The Adspace Digital Mall Network will air The Traveler and The Public Speaker My Great Story print ads throughout October. The ads will rotate on over 800 screens in all 60 Adspace malls. Click here for a list of Adspace Digital Mall Network locations.


ConnectiMED is the first TV network for patients with content approved by an advisory board of physicians. Their wall-mounted HDTVs are installed in waiting rooms in medical facilities throughout the country. ConnectiMED will be airing the 30-second My Great Story celebrity montage PSA throughout October on all 255 of their screens. Click here for a list of ConnectiMED locations.

Insider Exclusive is an Emmy Award-winning TV series that produces "60 Minute/Dateline NBC style" special TV documentaries broadcast on network TV, cable TV and DirecTV. The 30-second My Great Story celebrity montage PSA will air during commercial breaks of Insider Exclusive throughout October. Click here to find Insider Exclusive on a network near you.

Click here to view The Traveler and The Public Speaker ads on the My Great Story site, click here to watch the 30-second My Great Story celebrity montage PSA.

My Great Story

in the Media

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


In Scranton, Pennsylvania, The Times-Tribune interviewed Sara Wolff, My Great Story author and star of The Public Speaker print ad.

Click here to read the article. 



In Knoxville, Tennessee, Star 102.1 FM aired the My Great Story 30-second celebrity PSA. 





Disabled Radio covered the My Great Story campaign in their podcast. 

Click here to listen to the interview. 





Parenting Magazine posted an article about Chris Burke and his submissions to the My Great Story campaign.

Click here to view the article. 





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:





 Monica and David 


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.