National Down Syndrome Society E-Newsletter


August 2012  


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Achieving a Better Life Experience: Help NDSS Pass ABLE Act


NDSS has been busy leading a coalition of over 50 organizations that are supporting the Achieving a Better Life Experience (ABLE) Act (H.R. 3423/S.1872). The ABLE Act reached 183 cosponsors in the House of Representatives and 26 cosponsors in the Senate during the month of July. Thank you to all of those who took on the NDSS July ABLE Act Challenge and helped make that happen!


It's not too late to contact your Representative and Senators to ask them to sign on. Click here for the House and here for the Senate to find out if your members of Congress have cosponsored this important legislation. 


NDSS offers you three easy ways to contact your Representative and Senators:

  • Click here to use our call-in template
  • Click here to use our email template
  • Click here to set up a meeting with your Representative and Senators 
Florida Advocates meet with Senator Bill Nelson's (R-FL) Staff in Orlando, FL to discuss the ABLE Act
NDSS DS-Ambassadors, a new NDSS advocacy program (see the NDSS National Policy Center Update below for more information), will be leading efforts across the country to coordinate meetings with US Representatives and Senators who have not signed onto the ABLE Act. Click here to contact NDSS VP of Advocacy & Affiliate Relations Sara Weir If you are interested in participating in these meetings


NDSS National Policy Center Update

NDSS Joins Government Officials on Americans with Disabilities Act Anniversary to Discuss Disability Employment Opportunities


On July 26, NDSS joined Senator Tom Harkin (D-IA), Representative Cathy McMorris Rodgers (R-WA), Secretaries Arne Duncan and Hilda Solis, Mike Strautmanis from the White House, and Delaware Governor Jack Markell for an Americans with Disabilities Act (ADA) anniversary roundtable on disability employment issues.  NDSS VP of Advocacy & Affiliate Relations Sara Weir participated in the roundtable along with a select group of leaders in the disability, business and philanthropic communities. During her remarks, she discussed the ABLE Act as a policy solution to addressing employment barriers for people with Down syndrome and other disabilities. 


NDSS & Massachusetts Down Syndrome Congress Meet with Romney Campaign


Since it's a presidential election year, NDSS is meeting with both the Obama and Romney campaigns to discuss the NDSS legislative agenda. NDSS, along with representatives from the Massachusetts Down Syndrome Congress (MDSC), recently met with the Romney campaign's Domestic Policy Advisor at their campaign headquarters in Boston, MA. NDSS and MDSC discussed the importance of the Achieving a Better Life Experience (ABLE) Act and the significant impact it can have on people with disabilities and their families across America.


NDSS Launches New DS-Ambassadors Program


To support our efforts to advocate for the value, acceptance and inclusion of people with Down syndrome on the federal level, NDSS recently launched a national initiative called the NDSS DS-Ambassador Program. DS-Ambassadors are volunteer advocates committed to taking part in the democratic process and serve as liaisons between NDSS and their congressional delegations. The overarching goal of this program is to build long-lasting relationships with Congress to continually raise awareness, educate and advocate for public policy solutions that benefit the Down syndrome community. Each month, DS-Ambassadors are asked to work with NDSS on special assignments to advance the organization's advocacy efforts and to share their story with important elected officials.


Click here to contact NDSS VP of Advocacy & Affiliate Relations Sara Weir if you are interested in serving as a DS-Ambassador or would like more information


NDSS Partakes in the National Down Syndrome Congress 40th Annual Convention


NDSS was pleased to participate in the 40th Annual National Down Syndrome Congress (NDSC) Convention and Day on the Hill in Washington, DC. NDSS collaborated with NDSC on the Day on the Hill planning and NDSS VP of Advocacy & Affiliate Relations Sara Weir, spoke to the advocates during the NDSC advocacy training session about the Achieving a Better Life Experience (ABLE) Act. NDSS Associate Director, Education, Ricki Sabia, spoke during the Congressional Down Syndrome Caucus briefing on the Transitioning Toward Excellence in Achievement and Mobility Through Education (TEAM-Education) Act of 2011. NDSS Senior Policy Advisor, Postsecondary Education, Stephanie Smith Lee, facilitated a sharing session on postsecondary education during the NDSC Convention.


Financial Aid for Students with Intellectual Disabilities Launches New Website


NDSS continues to work closely with the US Department of Education (USDOE) to ensure information is provided to students with intellectual disabilities and their families about opportunities to receive student grants and work study jobs. NDSS is pleased that a new federal student aid website includes helpful information for these students about financial aid.


Click here to visit the website.


Disability Treaty Moves Forward in US Senate


On July 26, the US Senate Foreign Relations Committee passed the Convention on the Rights of Persons with Disabilities (CRPD) (Treaty Doc. 112-7), which was amended and passed by a vote of 13 to six. The CRPD is an international agreement for protecting the rights of individuals with disabilities. It sets broad goals of autonomy, equality, acceptance, and accessibility. NDSS supports this effort and is closely tracking CRPD as it moves forward to a US Senate floor vote. 


Click here to read more on the US International Council on Disabilities website.


Restraint & Seclusion Hearing Held in US Senate


The Senate Health, Education, Labor and Pensions (HELP) Committee held a hearing entitled "Beyond Seclusion and Restraint: Creating Positive Learning Environments for All Students." NDSS, through Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS), applauded the HELP Committee for examining this important issue. NDSS strongly supports the Keeping All Students Safe Act (S. 2020/H.R. 1381), which would limit the use of restraint and seclusion in schools and promote positive alternatives like those discussed during the hearing. 


Click here for an archived video of the hearing and written testimony


State Policy Updates

A Better Bottom Line: Employing People With Disabilities     

Self-Advocate Kayla Kosmalski pictured with Governor Markell at a recent event in DE


Delaware Governor Jack Markell, new chair of the National Governors Association (NGA), and Representative Pete Sessions (R-TX) are teaming up to promote a state by state public-private partnership initiative targeted at employing people with disabilities. This initiative will focus on the employment challenges that affect individuals with intellectual and other significant disabilities and the role that both state government and business can play in facilitating and advancing opportunities for thee individuals to be gainfully employed in the competitive labor market. NDSS has been asked to work with the Governor as he rolls out his new NGA initiative. 



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 year-round! Whether you aren't sure who your local elected representatives are or you are a seasoned advocate, there are many ways for everyone to get involved.


Click here to learn more and to sign up to receive important action alerts from the NDSS National Policy Center.


Monthly Webinars

Each month, NDSS provides a free educational webinar to anyone who is interested in learning more about various topics relating to Down syndrome, including health, education, research, family life and more. 


Click here for more information on past NDSS webinars.     


Join us this month on Tuesday, August 28 at 1:00 pm ET for a webinar featuring Actor and NDSS Goodwill Ambassador Chris Burke.  He will discuss his career as a network TV star playing "Corky" on TV's Life Goes On, his role as an advocate for people with disabilities and take questions from webinar participants.  


Click here to register.   


Are there topics you would like to have covered in an NDSS webinar? Click here to email suggestions to NDSS Manager of 

Education & Programs Vanessa Quick. 


 Buddy Walk® News

Join over 285,000 people at one of over 250 Buddy Walks® to promote the value, acceptance and inclusion of people with Down syndrome in their own communities. Visit to learn more and find a Buddy Walk near you!


National Partner Spotlight


NDSS is pleased to announce that the Emmy-award winning Imagination Movers are the newest National Partner for the Buddy Walk. The Movers have been working on a special Buddy Walk video to help promote the Buddy Walk program.  A copy will be emailed to all approved Walks shortly.  The Movers are long-time supporters of the special needs community and we are excited to partner with them. They have attended and supported local Buddy Walks in the past and look forward to attending and performing at future Walks as well.    


Click here to learn more about the Imagination Movers and their upcoming Rock-O-Matic tour.


Times Square Video Update 


Thank you to all of those who submitted photos for this year's Times Square Video Contest! Over 1,000 photos were submitted for the contest this year, and our third-party volunteers worked hard to narrow down the amazing selection to over 200 photos for the video. Congratulations to those whose photos were chosen! NDSS staff will contact you this week. We look forward to reopening the contest next spring.  


Click here to see the 2011 Times Square Video.


Whether or not your photo was selected, NDSS invites you to share your photo and the story behind it with the My Great Story public awareness campaign! The goal of the campaign is to ignite a new way of thinking about people with Down syndrome by sharing stories written by and about them that highlight their abilities and achievements. You can share your photo and story in any one of a number of sections, including family, friends, education, sports, hobbies, Buddy Walk and our newest section, Summer Fun. My Great Story is the perfect outlet for everyone to see the photo you submitted to the Times Square Video!


Click here to view the campaign and to share your story and photo.


Times Square Video Presentation and the New York City Buddy Walk


NDSS invites you to join us in Times Square on the morning of the New York City Buddy Walk on Saturday, September 22. The 2012 Times Square Video will be shown on the News Corporation Sony screen at One Times Square, located on Broadway between 42nd and 43rd Streets, beginning at 10:00 am and will be replayed at approximately 10:20 am. We will gather to watch the video on and around Military Island pedestrian plaza at the intersection of Broadway and 43rd street in Times Square. 


Immediately following the video presentation, buses will be available to transport those interested from Times Square to the New York City Buddy Walk site at The Great Hill in Central Park. Participants will be directed to the buses by NDSS staff. You must reserve a seat on a bus no later than September 14.  


Click here to email the NDSS Buddy Walk staff to make your bus seat reservation. Please include "Times Square Video Bus Reservation" in the subject line and include your full name and the number in your party.  

Click here to register for the New York City Buddy Walk. All participants registered by August 31 are guaranteed a t-shirt in their size (selection made at registration).

Click here to see our travel advisory page. NDSS does not reserve hotel rooms in Manhattan for the NYC Buddy Walk, but we are happy to connect you to helpful resources.


Buddy Walk Promotional Materials


The Buddy Walk staff would like to remind you of the promotional materials available at no charge to approved Buddy Walk events.  If you have not yet requested your Radio PSAs, TV PSAs, posters or NDSS brochures, please click here to email NDSS National Buddy Walk Director Becky Switalski.


Stay Connected!


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

Click here to follow the Buddy Walk on Twitter.

Click here to follow the Buddy Walk blog.


Dan Piper Award: Call for Nominations



The Dan Piper Award was established to commemorate self-advocate Dan Piper's life by celebrating an individual with Down syndrome who, through everyday activities, brings about a greater public awareness and understanding of people with Down syndrome.  By living to his or her fullest, this person is an advocate for themselves and others with Down syndrome. The award will be presented on September 22  in New York City during the NYC Buddy Walk. 


We are currently requesting nominations for the Dan Piper Award from our affiliate groups.


Click here to find an NDSS affiliate in your area.

Click here to learn more about Dan Piper and the award given in his name. 


Straight Talk with Chris Burke


NDSS Goodwill Ambassador Chris Burke is best known for his TV role as Corky Thacher on the hit ABC show "Life Goes On" and his recurring role as Taylor, an angel, on the CBS series "Touched by an Angel". Chris works in the NDSS office, where he is a member of the staff. As an actor, singer, writer, and dedicated self-advocate, Chris has received numerous awards from local and national organizations for his tireless and inspiring work on behalf of people with disabilities.  



As NDSS Goodwill Ambassador, my job is to promote Down syndrome awareness so others will be aware of our needs. This is what I did on a special volunteer day this month when volunteers from a company in New York City came into the NDSS office to learn about Down syndrome and work on a special project. It made me feel happy that people wanted to come volunteer at NDSS.

Volunteering really helps us to understand each other. The volunteers who came in learned a lot about Down syndrome. I also feel like I learned a lot from them.  As an active member of the self-advocate community, I want to always encourage other self-advocates to volunteer and to get involved in other programs. That way, you will learn a lot, and others can learn from you and become more knowledgeable about Down syndrome. 

My message is: obstacles are what you see when you take your eyes off the goal. Believe in yourself, work hard, and never give up. It's not about our disability - it's about ability! We should learn about these messages that everybody with a disability should learn how to face our everyday situations. My advice is to visit or call our helpline to find out how you can get involved. 


This is just one example of the many ways people in a community give back. I hope all of you find a way to give back too! 


Do you have a question or topic you'd like Chris to cover in this section?

Click here to let us know.


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.  

Ashley Neal


NDSS met Ashley Neal when she registered to be a part of NDSS Your Way in early June.  She created a personal fundraising page in the NDSS New Ideas section and designed a fundraising campaign to reach her goal of $500. 


Ashley is a doctor of physical therapy student at Youngstown State University in Ohio. It's mission statement describes the school as "an urban research university that emphasizes a creative, integrated approach to education, scholarship and service." Ashley took this mission to heart. While taking a course in community applications, she was required participate in an advocacy project on behalf of a group of her choice. Ashley has a cousin with Down syndrome so she chose NDSS. NDSS Your Way is a great fit for Ashley because it allows her to share her story, solicit friends and family for donations for a cause in which she believes and provides her with a platform to advertise the t-shirts she designed for her campaign.


Ashley's t-shirts feature a hand print with a single palm crease, a physical trait common in individuals with Down syndrome.  So far, Ashley has raised more than $100 from t-shirt sales alone, which has been added to her other fundraising efforts.  She is very close to reaching her goal and plans to continue to sell the t-shirts even after her goal is surpassed.


When we asked Ashley what motivates her, she told us that her cousin who has Down syndrome is the reason she chose a career in physical therapy and continues to be her inspiration to this day. She said, "through my cousin and my career path, I have met numerous, remarkable individuals with Down syndrome and their families. These individuals are some of the most motivated, energetic and happy people I have ever met. They have all left a hand print on my heart and I hope that through this advocacy project I will be able to leave even a fingerprint on their lives."


Click here to visit Ashley's NDSS Your Way page.


Scholar Spotlight  


Each year NDSS awards postsecondary scholarships to students with Down syndrome through the O'Neill Tabani Enrichment Fund. In 2011, twelve outstanding students received grants to help cover the cost of their postsecondary or enrichment courses. Recipients of the O'Neill Tabani Enrichment Fund were invited to write about their experiences as students.
Jessica Floryshak of Macungie, PA received a grant through the O'Neill Tabani Enrichment Fund in 2011. Jessica shared the following about her college experience:
"Hi, my name is Jessica Floryshak.  I am 29 years old.  I started my first year at East Stroudsburg University in the fall of 2010.  My two favorite classes were Daily Living and Health and Wellness.  In the spring I really liked Computer class and Career Awareness.  I lived in a house with my classmates and two mentors.  We all had to do our cleaning, laundry and cooking.  I had to plan my menu and do food shopping.  I walked with my friends every day to the Rec Center for our afternoon workout. At 5:15 we would go to the Cafeteria or Union for dinner.  I joined Best Buddies and Stage 2 on campus.  I made new friends.  We had lots of fun." 
NDSS congratulates Jessica on her hard work. She is a wonderful role model 
for other students with Down syndrome who wish to pursue their dreams 
to enrich their lives through postsecondary education. 

Click here to learn more about the O'Neill Tabani Enrichment Fund. 


My Great Story Summer Fun Section



Are You Doing Something Fun this Summer? Share Your Story!


The My Great Story campaign seeks to ignite a new way of thinking about people with Down syndrome by sharing stories written by and about them. This summer, whether you're working, playing, going on vacation or staying close to home, we want to hear about it! Self-advocates, we especially want to hear how you're spending your summers! 


Click here to share your story. 


My Great Story of the Month Contest 





Congratulations to Jerod Garland of Pella, IA on winning the My Great Story of the Month Contest! Jerod's story received the most votes in July and he will be receiving a $100 Brooks Brother's gift card.


The author of the story with the most votes in August will win the complete Signing Time Series One DVD collection. Share your story and spread the word throughout the month to win this prize!

Click here to share your story. 


Signing Time is a labor of love, born out of the desire for one mother to create a community that could communicate with her deaf daughter. Two Little Hands Productions, co-founded by sisters Rachel Coleman and Emilie Brown, is the company that produces and distributes the Signing Time product line. Signing Time is a captivating, entertaining series for children and families that teaches basic ASL vocabulary in a fun and engaging way. 


Click here to learn more.  


My Great Story: Stories of the Month


Each month, the two stories with the most votes on the My Great Story site are featured in this section. The votes are reset at the end of each month.


Visit to check out the campaign and 

click the submit bookmark to share your story!

The Nazis Don't Approve

Jerod Garland
Pella, Iowa


As I was holding the video camera, I couldn't help but think about Adolf Hitler. Granted, when watching your daughter perform at her first dance recital, it's probably not the first thing that pops into the minds of most dads. But there was Cayla, wearing her fluffy little tutu, and it was time for her to dance. About 70 years ago, Adolf Hitler believed anyone with a handicap was useless. In fact, he felt so strongly about it he developed an entire program designed to exterminate them.


Everyone learns about the horrors of the Holocaust in school, but not everyone learns about T4, Hitler's plan to better purify his master race by eliminating the "undesirables." Under orders from Hitler, Nazi doctors killed hundreds of their own people because they could contribute nothing positive to the Third Reich. Wastes of space.


One of Hitler's undesirables was getting ready to dance, and I had no idea what to expect from her. I hit record on the video camera as the music started and aimed at my little girl, out there in front of everybody. In sports terms, we'd call her a "gamer." She absolutely knocked it out of the park. Oh, it was far from perfect. But the little girl was trying so hard to get it right. She was really taking this seriously and was so focused on getting every move in. I was surprised by how quickly my emotions were stirred. Ten seconds in and I had a lump in my throat. A couple spin moves later and my eyes were welling up with tears. Just keep the camera steady. I was partly smiling and partly trying not to make it too obvious that I was crying at the same time.


When we got the official word that our baby had Down syndrome, we wept together. In that reaction, we voiced silently through shared sobs our realization (or so we thought!) that any dreams and hopes we had for our child were lost. You could probably even say that in that moment our view about Cayla and her life and Hitler's views about Germany's handicapped weren't so far apart. In our short-sightedness, we didn't have much hope. There was pain. Despair. Even some anger. While watching Cayla, I thought of German parents handing their handicapped children over to be placed on a Nazi bus knowing they would never come back. This may just be a proud dad talking tough from behind a computer screen, but right now I'm thinking the Nazis would have to pry Cayla away from my cold, dead hands if they wanted her.


Yeah, our journey has been difficult with her. But we're so excited about what Cayla is going to accomplish with her life. A successful dance recital is just the tip of the iceberg. Here's to many more recitals that Hitler would frown upon.


Valentina the Model
Cecilia Elizalde
Miami, Florida


This story is about my daughter, Valentina Guerrero, who has Down syndrome. She was born on September 16, 2011 and we found out about her condition that day. Interestingly enough, we had picked her name years ago, which means brave warrior in Spanish. Although the first few weeks were incredibly hard because we were quite ignorant about Down syndrome, with her innate wisdom and pure love, Valentina opened our eyes and showed us the infinite benefits of this magical world and how lucky we truly are! We realized that in this path of life we will face some challenges - but what family doesn't? - however the rewards that someone with Down syndrome brings are far more important and fulfilling! 


We decided to make it our life's mission to change the perception of Down syndrome shining a light on the wonderful experiences and lessons that people with Down syndrome bring to life's journeys. A few weeks after we set this goal for ourselves, we got a call from a top fashion executive asking if Valentina would be interested in modeling! At nine months old, she became the first child with Down syndrome to be the main model for the prestigious fashion brand, Dolores Cortés USA. Dolores Cortés is a respected European swimwear designer and this summer is in charge of designing the outfits for the Spanish synchronized swimming team for the 2012 London Olympics. As her US model, Valentina appears on the cover of DC KIDS 2013 (children's collection) catalogues and brochures which will be sent to clients, distributors and specialized media. Furthermore, over 500 guests received these materials at Mercedez Benz Fashion Week in Miami Beach on July 20, and thousands of individuals that attended this event were greeted by posters with her signature smile! 


Not only does this show that people with Down syndrome are just as beautiful and capable of anything they set their minds to, but it also carries a clear message of inclusion. Every child deserves the same opportunities regardless of their physical, economic, social, racial or medical condition. Valentina hasn't even turned one, and is already working to change society's values by opening our minds to a wider definition of beauty, and celebrating that we are all different, and that's what makes us unique!

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