National Down Syndrome Society E-Newsletter


May 2012 


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Introducing NDSS Your Way!


NDSS is pleased to announce the official launch of NDSS Your Way!  This program invites you to compete, celebrate and create with us. NDSS Your Way is a new online fundraising program that is geared towards independent fundraisers interested in raising money on behalf of NDSS. Participants in this program create personalized fundraising web pages in support of an event or individual pursuit. Each campaign is hosted independently and NDSS staff provides support and guidance, as needed. All proceeds raised through the NDSS Your Way program go directly to NDSS.


Fundraisers are invited to create a customizable web page in one of three categories: Team NDSS, NDSS Celebrations or NDSS New Ideas. Regardless of which category you choose, your personal page can pay tribute to someone who inspires and motivates you.


As an NDSS Your Way fundraiser, you further the NDSS mission of advocating for the value, acceptance and inclusion of people with Down syndrome. NDSS works to create a culture that fully accepts and includes the more than 400,000 Americans with Down syndrome. We envision a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.


NDSS encourages you to run a race, host a block party, plan a dance marathon, grow a moustache, climb a mountain - however you choose to do it, do it your way and do it for Down syndrome! 


Click here to learn more about NDSS Your Way and get started!

Click here to email us with questions and comments.


NDSS National Policy Center Update

ABLE Act - We Still Need Your Help!


The Achieving a Better Life Experience (ABLE) Act (H.R. 3423/S.1872) continues to gain support in both the  U.S. House and Senate. Cosponsors have reached 141 in the House and 16 in the Senate. The ABLE Act still needs more cosponsors, and we need your help!


On April 25, NDSS joined forces with many other national disability organizations to host National ABLE Act Call-In Day to build additional support for this important legislation. Thank you to all who called their Senators and Representatives and encouraged them to become cosponsors. For those who haven't yet, it's not too late to take action and reach out! 


Please see the lists below to find out if your elected officials have already signed on.

Click here to view the list of Senate cosponsors.

Click here to view the list of House cosponsors.


Here are three ways that you can make a difference right now:


1) Call and/or write your Senators and Representative using the provided templates and ask them to cosponsor the ABLE Act now. If they are already cosponsors, reach out to thank them!

- Click here to view the call-in template.

- Click here to view the email template.


2) Set up a meeting with your Senator and/or Representative during their state/district work period.

- Click here to view the Senate/House's Congressional calendar so you can find out when your members of Congress are back in your state/district.

- Click here for more information and a letter template to set up a district meeting. (If you cannot copy the template from the PDF, click here to visit the ABLE Act section of our website and click "ABLE Act District Meeting Request Template" for a Word version.)


3) Participate in the ABLE Act Webinar co-hosted by NDSS and Dads Appreciating Down Syndrome (D.A.D.S.) National on May 22 at 7:00 PM ET. 

- Click here to register.


U.S. Department of Health & Human Services (HHS) Adds Down Syndrome to the National Alzheimer's Plan


On April 13, HHS released its second draft of the National Alzheimer's Plan, which now includes several references to Down syndrome and includes a focus on improving care for populations that are disproportionally affected by Alzheimer's disease. The draft also establishes a taskforce to take steps towards addressing the unique care challenges faced by people with younger-onset Alzheimer's disease, and improve access to long-term services and supports for younger people, including those with Down syndrome. NDSS and several leading research scientists and clinicians focusing on Down syndrome have been working to include Down syndrome in all aspects of the plan. 


Click here to read the draft plan.


On April 17, NDSS Board Member and Self-Advocate Sara Wolff, from Moscow, PA, provided remarks in front of the HHS Advisory Council on Alzheimer's Research, Care, and Services in Washington, D.C. Wolff talked about the importance of including Down syndrome in the National Alzheimer's Plan.


NDSS Advocates for Continued Enhancements to Elementary, Secondary and Higher Education for Students with Disabilities at Both the Federal and State Levels


In April, NDSS met with key staff members of the Senate Health, Education, Labor, and Pensions (HELP) Committee to discuss a range of important issues including: 

- Maintaining strong school accountability for students with intellectual disabilities in the Elementary and Secondary Education Act (ESEA) reauthorization

- Ensuring that the flexibility waivers of ESEA rules, which the U.S. Department of Education is in the process of approving, will appropriately address the needs of students with disabilities who take an alternate assessment 

- Expediting the pace of implementing the final regulations of the Higher Education Opportunity Act of 2008, particularly those that pertain to program approval for post-secondary education programs and access to financial aid


Through its leadership and participation in the Collaboration to Promote Self-Determination (CPSD), NDSS met with the National Governor's Association. The meeting focused on education issues such as the ESEA flexibility waivers being issued, various states' development of Employment First initiatives, and proposed changes to Medicaid programs at the state level that have potential to harm people with disabilities, including intellectual disabilities.


Click here to learn more about CPSD.


New Administration for Community Living


U.S. Secretary of Health and Human Services (HHS) Kathleen Sebelius announced a new organization within the HHS, the Administration for Community Living (ACL). The ACL will include the efforts and achievements of the Administration on Aging, the Office on Disability and the Administration on Developmental Disabilities in a single agency. The ACL will feature enhanced policy and program support for both cross-cutting initiatives and efforts focused on the unique needs of groups (children with developmental disabilities, adults with physical disabilities, and seniors, including seniors with Alzheimer's). 


Click here for more information about ACL.


Let's Cook! Healthy Meals for Independent Living by Betsy D Riesz, PhD and Anne Kissack, MPH, RD


NDSS was first introduced to Dr. Riesz through the office of Senator Tom Harkin (D-IA), Chair of the Health, Education, Labor, and Pensions (HELP) Committee. The 54 recipes in this colorful cookbook are based on 20 years of recipe and skill development for and with Sarah, a young woman with Down syndrome. This book targets students ages 18-21 in public school "transition" classes; young adults with intellectual and developmental disabilities (IDD) in supported living residences; older adults with IDD; and vocational and occupational programs.  


Click here to order Let's Cook! or call 800-322-5679. Quantity discounts are available by calling Appletree Press, Inc. at the above toll-free number.



Why Advocacy Matters: Testimonials from the Buddy Walk® on Washington



"Lobbying both locally and nationally is very important because the legislators are the policy makers and they have the power to put our ideas into laws.  When they meet with all of us, especially if we come from their home district, they are able to interact with us personally and remember what our issues and concerns are. At the Buddy Walk on Washington®, we were received with enthusiasm and respect as we presented our concerns to them. I felt they were grateful to be more educated on our priority bills.


John Anton, Self-Advocate from Boston, MA

While at the Buddy Walk on Washington, with Maureen Gallagher from the Massachusetts Down Syndrome Congress and the rest of our delegation, we met with our two senators, Senator Scott Brown and Senator Bill Keating, and all 10 of the Congressional leaders. Meeting with representatives and senators can make change happen, which I've seen through advocating for the name change of the Department of Mental Retardation to what is now the Department of Developmental Services.  It took over 12 years of hard work but our voices were heard! It's important to learn the process of how a bill becomes a law, form partnerships with others who support the same issues, and have patience because it will not happen overnight.


During the Buddy Walk on Washington, we met delegations of advocates, professionals, support staff, parents and many others who were united in advocating for their cause. Through everyone working together, and with leadership and teamwork, we can achieve a better outcome." 

- John Anton, Boston, MA


"The 2012 Buddy Walk on Washington was an unforgettable trip. I attended on behalf of my state organization, Down Syndrome Association for Families of Nebraska, and was joined by a fellow board member. Following the model provided by NDSS, we scheduled appointments with our two Senators and three Representatives. It was engaging and satisfying to discuss the issues impacting people with Down syndrome with the people who can change legislative policy. 


Kelly Ekeler and DEan Fuelberth from Lincoln, NE pictured with Senator Johanns (R-NE)
Our members of Congress and their staff made us feel welcome. After showing Senator Johanns (R-NE) pictures of my 20 month old son, who has Down syndrome, we discussed how the Achieving a Better Life Experience (ABLE) Act would remove obstacles in financial planning for people with Down syndrome. Back in Nebraska, we are elated to learn the Senator signed on to cosponsor the ABLE Act after our visit. Our thanks to Senator Johanns and NDSS for making this happen. We look forward to Congress passing the ABLE Act!"   

- Kelly Ekeler, Lincoln, NE


"As the Buddy Walk on Washington was approaching, I found myself between states of excited anticipation and disguised nervousness. The drive up to D.C. only offered a brief distraction before I found myself at the Buddy Walk on Washington on stage in front of 330 advocates from across the country. We were there to demonstrate how a successful meeting with a member of Congress should go. As time went on, I felt more at ease with having 660 eyes focused on us because I knew our role-playing scenario provided invaluable training to prepare advocates for the next day on Capitol Hill. NDSS provides a live training which addresses the various scenarios that you might experience and how to react in your Congressional meetings as well as best practices. Come there as a green advocate and you will leave seasoned!


Cliff Stout from Hampton Roads, VA pictured with Andrea Anderson and NDSS National Policy Center Senior Advisor Stephanie Smith Lee

If you are thinking that big government and lobbying aren't your strong suits, then I can reassure you that your love for your child or loved one with Down syndrome IS your strong suit! NDSS focuses on three legislative priorities at the Buddy Walk on Washington, and this year they were the ABLE Act, Trisomy 21 Research Resources Act, and the Elementary and Secondary Education Act (ESEA) reauthorization. NDSS provides the training, access to subject matter experts, instructions on how to schedule your visits, and much more to make the Buddy Walk on Washington a success! The Buddy Walk on Washington is the ultimate advocacy experience. Two thumbs way up!"  

Cliff Stout, Hampton Roads, VA


"Washington, D.C. and relationships do matter. I was joined by four other advocates from Wisconsin at this year's Buddy Walk on Washington. Our Congressional meetings with the Wisconsin delegation ranged from meetings with young Hill staff to seasoned Hill staff and a few visits with our Senators and Representatives themselves. As this was my first trip to D.C. to advocate for people with Down syndrome, I learned early in the day that we had to stop being polite, ask the hard questions, and 'sell' our position. Being on Capitol Hill and seeing first hand how things get done in Washington is empowering (not to mention fun) and I encourage everyone to make the Buddy Walk on Washington a priority for your organization.


Sterling Lynk from Madison, WI pictured with Senator Johnson (R-WI) and Tom O'Day

Back in Wisconsin, we are already seeing 'action' from our Buddy Walk on Washington experience. A few weeks later, my organization hosted a World Down Syndrome Day event called "Support 21". Senator Johnson (R-WI) sent his district staffer to participate in our event, which brought together business, political, and religious leaders from the area together to educate them about Down syndrome. This was a great way to begin to educate and engage the Senator and his staff on our issues. Moreover, as a follow up and request from our meeting with Senator Kohl's longtime health staffer, we worked with NDSS to submit 'report language' to support research goals for Down syndrome at the National Institutes of Health (NIH). Report language is contained in the committee report when Congress passes its spending (or 'appropriations') bills and provides additional direction to federal agencies, like NIH, on key priorities to focus on in a given year.  I am already looking forward to next year's Buddy Walk on Washington but feel strongly that advocacy is not just a one-time a year sport - it's year-round, and my organization is committed to working with NDSS day in and day out to advocate for people with Down syndrome."

- Sterling Lynk, Madison, WI

Another Opportunity to Advocate on Capitol Hill: National Down Syndrome Congress Convention


NDSC is hosting a "Day on the Hill" on July 19 in conjunction with its 40th annual convention. This is another great opportunity to advocate for people with Down syndrome on Capitol Hill. Key legislative priorities will be related to research funding, employment, long-term support issues, and the prevention of dangerous restraints, seclusion and aversive interventions in schools. 


Click here to register. (Space is limited, so please register by June 8.)  


Stay tuned... NDSS will be announcing our 2013 Buddy Walk on Washington Annual Advocacy Conference dates in July.

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 an educational webinar free of charge to anyone who is interested in learning more about Down syndrome and topics such as health, education, research, family life and more. In past months, families, self-advocates, affiliates, teachers and health care providers have enjoyed presentations including Prospects for Improving Cognition in People with Down Syndrome, Oral Health and Down Syndrome and Sibling Issues: What Your Other Children Without Down Syndrome are Thinking. 


Click here for more information on past NDSS webinars.    


In May, NDSS will co-host a webinar with Dads Appreciating Down Syndrome (D.A.D.S.) National titled "How You Can Help Us Pass the ABLE Act Today." The webinar will be on Tuesday, May 22 at 7:00 PM ET. The Achieving a Better Life Experience (ABLE) Act (S. 1872/HR 3423), when passed into law, will provide individuals with Down syndrome and their families the same types of flexible savings tools that all other Americans have through college savings accounts, health savings accounts and individual retirement accounts.


Speakers will include Steve Beck, NDSS Board Member and VP of the Down Syndrome Association of Northern Virginia; Joe Meares, D.A.D.S. National Chair; Sara Hart Weir, NDSS VP of Advocacy and Affiliate Relations and Darin Yoder, D.A.D.S. National - National Public Policy Advisor. The Down syndrome community has a real chance at getting the ABLE Act signed into law this year but we still need your help! Participate in this webinar and learn how you can do your part to pass this bill today.


Click here to register. 


Are there topics you would like to have covered by an NDSS webinar? Click here to email suggestions to Vanessa Quick, 

NDSS Manager of Education and Programs. 


 Buddy Walk® News

Visit to get involved and be inspired!


Give Us Your Best Shot: Submit Your Photo for the 2012 Times Square Video


On Saturday, September 22, NDSS will kick off Down Syndrome Awareness Month and the New York City Buddy Walk® with a video presentation in the heart of Times Square, featuring more than 200 individuals with Down syndrome from across the world. We invite you to submit a photo for this one-of-a-kind feature presentation!  The contest will run from May 1 - July 13 and winners will be contacted the week of August 1. 


Click here for more information about the Times Square Video.

Click here to submit your photo. 


2012 Buddy Walk Registration


Attention Walk Organizers: Buddy Walk events must be registered each year with NDSS.

If you have already registered your Walk for this year, you do NOT need to register again. If you have not registered your Walk, please do the following:  


- Click here to log-in using your user name and password from last year.

- Once logged in, click on "Register a 2012 Walk" and complete your Walk registration.

- A custom license agreement will be emailed to you once your registration has been reviewed.


If your group is interested in organizing a Buddy Walk for the first time, please click here to get started.


NDSS Buddy Walk Ranks Nationally 


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

The Buddy Walk is ranked:


- #25 for dollars raised

- #11 for number of events

- #9 for number of participants 


Buddy Walk Blog


Thank you to Brittani Keefe of the Northern Nevada Down Syndrome Network for guest blogging for the Buddy Walk blog.  Brittani shared some of her tips on how to keep your stress levels low so Buddy Walk Organizers can focus on making their Buddy Walks as successful as they can be. We hope you enjoyed her post as much as we did! 


Click here to check it out.


If you are interested in being a guest blogger for the Buddy Walk blog, please click here to email Becky Switalski, NDSS National Buddy Walk Director.


Share Your Buddy Walk Stories


Do you have a Buddy Walk story you'd like to share? 


Click here to view the My Great Story Buddy Walk section. 

Click here to share your Buddy Walk story!


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.


Upcoming National Events


Annual Spring Luncheon


Wednesday, June 6

Location: 583 Park Avenue, New York, NY

Honoring: Jane Lynch, Emmy Award winning actress, comedian and author

Featuring: The Melissa Riggio Voices Award presented to Self-Advocate Diana Stolfo

Master of Ceremonies:  Kristine Johnson, Anchor, CBS2 News at 5:00 and 11:00 PM 

Click here for a printable invitation.

Click here for more information and to register online. 


16th Annual Golf Outing


Monday, June 18

Location: Baltusrol Golf Club, Springfield, NJ

Co-chairs: Robert and Meghan Cioffi

Special guest player: A.J. Hawk, Linebacker, Green Bay Packers 

Click here for a printable invitation.

Click here for more information and to register online.

New NDSS Young Leadership Committee at Ohio State University

The NDSS Young Leadership Committee works to improve public awareness and perception of individuals with Down syndrome, focusing specifically on a younger demographic. The committee is dedicated to engaging future leaders within the Down syndrome community through fundraising and events by leveraging various networks to increase participation in NDSS. Members will act as ambassadors in their communities to address stereotypes and educate the public.


There is a newly formed student organization at Ohio State University called Student Advocates for Down Syndrome. The group is devoted to raising awareness about Down syndrome, educating students, volunteering, and advocating on behalf of individuals with Down syndrome and their families. The membership is composed of siblings and relatives of individuals with Down syndrome, special education majors, occupational and speech therapy majors, and others who are curious about the cause and interested in making a difference. They volunteer locally with the Down Syndrome Association of Central Ohio (DSACO) and are also committed to being part of the NDSS Young Leadership Committee national initiative.


Any Ohio State University student interested in joining Student Advocates for Down Syndrome can click here to contact Jessica Prokup and get involved.


Click here to email Pam Sandonato, NDSS VP of Development, if you are interested in starting a Young Leadership Committee on your college campus or elsewhere.


NDSS in the Media


NDSS is pleased to work with so many people across the country who help us further our mission of promoting the value, acceptance and inclusion of people with Down syndrome. We thank those who covered NDSS through both traditional and social media outlets this month.


In New Orleans, LA, WRNO aired an interview with Self-Advocate Craig Blackburn, recipient of the 2012 Champion of Change Award at the Buddy Walk® on Washington, and Sara Weir, NDSS VP of Advocacy and Affiliate Relations.

Click here to listen to the interview (it begins around minute 12:30).



We would like to extend a shout out to those who blogged, posted, tweeted, retweeted or otherwise shared NDSS news via social media this month. Here are a few of those who did: 







Treasure Coast Down Syndrome Awareness Group



Kandace Klenz

Peggy Scott


NDSS on Pinterest


Pinterest, a site that allows users to organize virtual bulletin boards, has taken the social media world by storm. NDSS has joined in and started our own page, with several boards relevant to Down syndrome and our organization, including Down Syndrome Facts and Figures, Chris Burke Quotes and My Great Story of the Month. All are invited to check out our page and follow our boards, repin our pins and spread the word! We will be adding more boards and pins frequently. Pinterest is another great way to keep up with the latest NDSS and Down syndrome happenings!


A special shout out goes to those who have already found our page, followed, repinned and liked our boards and pins. Here are a few of those who did:


Ashley Harris

Corrine Bludworth

Nicole Krebs

Melinda Stone Kirby

Kim Smoak  


Click here to find NDSS on Pinterest.


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".  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. Chris works in the NDSS New York office, where he is a member of the staff.


Like Mother, Like Son


My mom, Marian Burke, has been a great advocate for the Down syndrome community - and especially me.  She was on the Board of Directors of NDSS and always makes herself available to speak with new parents of children with Down syndrome.  I really learned a lot from her also.  I went through Early Intervention and she wanted me to watch Sesame Street, because she wanted me to learn how to count, how to read and all about how to use sign language.  My mom wanted me to go to school.  I went to the Kennedy Child Center in New York City, NY; Cardinal Cushing in Hanover, MA; and Don Guanella in Springfield, PA. I would like to say that my mom is a wonderful advocate.  


My advice for mothers on how to raise their child with Down syndrome is to do what my mom did - be comfortable with your child, give them proper care and a chance to grow up. I remember when I was little, I had shown my mom a Cheerios cereal box, and I showed her how I spelled Chris "C-H-R-I-S" by pointing to the letters on the box.  From that she knew I could spell my name. She couldn't believe it!  


When I was in production for Life Goes On, the ABC family television series, my mom did not understand about show business, but she became my dialog coach.  When I do guest appearances for TV shows and television movies, my mom goes over my lines from different scripts. 


I really learned a lot in the past and I keep learning in the present.  I'm very proud that I have my parents, family, relatives and friends.  I really do respect and love them all. Coming from my childhood experience, I know what it's like to grow up with someone who taught me love and showed support and encouragement from the moment I was born - my mom.  To me, I just wish that every day was Mother's Day.  It's true.  We have good times and bad times, but this is a dedication to a person whom I cherish and admire.  She's my biggest inspiration - my mom, Marian Burke.  I love her so much, ever since I was an infant. But she did not raise a Hollywood actor or a singer with the band,  all she wanted was a healthy baby boy - me. 


I just wanted to say in a few words to my mom, that I love you and wish you a happy Mother's Day.  From your darling Chris. 


Click here to view Chris' submission for the My Great Story campaign's Mother's Day section (and click the submit bookmark to share your Mother's Day story!).


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.  

The Bunt Family


In February, NDSS was introduced to a family that has proven to us all that love is boundless and life is fragile.  Although the Bunt Family did not set out to become fundraisers for the cause, it has been sewn into the fabric of their family since the passing of their beloved Sophie Analie, just before her first birthday.


Sophie was born on March 7, 2011. Prenatal tests showed no indication of Down syndrome, so her parents, Stephanie and Chris, were shocked when her Down syndrome diagnosis, along with a small atrial septal defect in her heart, were confirmed. Sophie spent her first 10 days in the NICU. Stephanie remembers her first real smile when her three year old son, Brayden, arrived to see Sophie, completely oblivious to anything other than how perfect "his new baby" was. He was right; she was perfect, just not in the way they had initially imagined.


Sophie was the calmest, easiest, happiest, and cuddliest baby, and the outpouring of support from friends and family following her diagnosis was incredible. Sophie had an incredibly special relationship with her brother, who absolutely adored her. He was constantly hugging her, kissing her and helping her.  Sophie equally enjoyed watching him and she smiled at him all the time. They were the best together.


At three months Sophie started daycare, where she was a favorite in the baby room and was loved by all the teachers. They had never had a child with Down syndrome in their program and they were constantly amazed at how she kept up with all the other babies. Because of Sophie, their understanding of Down syndrome is forever changed.


Sophie passed away unexpectedly in her sleep on Feb 21, 2012 at 11 1/2 months from respiratory complications due to an Respiratory Syncytial Virus (RSV) infection. The outpouring of sympathy, love, and generosity that has followed can only be described as amazing. Sophie's memorial service brought people from near and far, many of whom had followed the family blog. It helped the family to realize the impact Sophie's life had on so many people in such a short period of time.


Sophie taught the Bunt Family many things. They had no idea what life would be like with her and regret that they didn't know right away about all the joys she would bring them. Some were lessons in the little things, like the joy of smiling with your whole face. Other lessons were more significant, such as learning that perfection comes in all packages and that happiness is a journey, not a destination.


Today, the Bunt Family's memories of Sophie are strong and their commitment to sharing Sophie's love with others is even stronger. There is a sign that hung on the wall in Sophie's room that embodied everything they wanted for her - it read, "Be your beautiful self."  That is their message in Sophie's memory. 


To date, more than $13,000 has been donated to NDSS in Sophie's name from 100 donors in 17 states. The Bunts will continue to raise funds in Sophie's name in order to spread awareness to those who do not understand or have not experienced the beauty, love, ability, and happiness that children and adults with Down syndrome offer our society. Sophie would have continued to share her gifts with the world, and the Bunts hope that their efforts help create an inclusive society were people are accepted for who they are and judged on their actions, not their circumstance.  


Click  here to view the Bunt Family's NDSS Celebrations page in honor of Sophie Analie Bunt. 

Click here to view a tribute video in memory of Sophie Analie Bunt. 


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 2011 O'Neill Tabani Enrichment Fund were invited to write about their experiences as students.


This month's Spotlight is on Craig Blackburn of Metairie, LA. He shared the following about his educational experiences and expectations for the program he will begin shortly:


My name is Craig Blackburn and I am almost 33 years old.  I have Down syndrome, but I have not let that stop me from trying.  I started school in inclusive education at eight years old and I graduated twelve years later.  The day I graduated was one of the happiest days of my life and the achievement of one of my goals and that of everyone who supported me through all those years. 


I tried college after graduation but at the time I was just not ready.  I have always wanted to pursue other education as that has been another goal. I graduated from an eight month training program called Partners in Policymaking, which teaches individuals with special needs and others how to advocate.  Partners taught me many new skills and helped me understand that I really could make a difference.  My graduation project was to become a motivational speaker.  I worked with a friend who is skilled in this area for a year and since 2004 I have traveled throughout the U.S. and even to Doha, Qatar spreading the messages of ability, inclusion and full participation in life for all. 


In 2007, I became engaged to my girlfriend, Heather, and we hope to someday become man and wife. Heather lives in Oklahoma and I live in Louisiana so working out the federal benefits between states has proven to be a challenge. We aren't giving up, but advocating for change so that one day we can be together.


In 2010, through the program called A Home of My Own, I purchased a condominium and now live independently.  That was a big change, but one that I really wanted and worked hard for.


I have worked part-time at Winn Dixie for twelve years as a courtesy clerk and now would like to advance myself and my skills.


I applied for and was awarded, by NDSS, one of the 2011 O'Neill Tabani Enrichment Fund scholarships for $2,000.  That was awesome because it will permit me to pursue another of my goals! 


I knew I wanted to pursue culinary, but I did not want to have to take the extra college courses working toward a degree for several years.  I wanted to learn the skills as soon as possible.  While motivational speaking in Florida, I learned about a program called Hands on Education.  This program offers training in many areas, one of these being culinary.  The program is geared toward individuals with special needs and accepts only four individuals for each training sessions which last two weeks.  During the sessions, the students stay at a Hyatt Hotel and work with a chef everyday who teaches food preparation skills.  When you graduate, after the two weeks, you receive certification in food preparation and a set of your own knives. I could not believe it, but this was exactly what I have been looking for. 


I applied to Hands on Education in Tampa, FL and have been accepted for their August 2012 class.  I live in Louisiana so I will fly to Tampa and stay for the two weeks of training.  I can't tell you how excited I am!  Meeting this goal and gaining new skills, I will be able to look for employment in the culinary field or stay at Winn Dixie and move to another position.  The food preparation skills that I learn will also benefit me in my independent living and someday when I marry.


I will not stop motivational speaking because spreading the message of trying is so important and I just really like meeting new people.  Success does come in trying.  We are not competing against others, but setting our own goals and working toward these.


To NDSS, I have to say that I am so thankful for this opportunity they have given me to become Chef Craig!


NDSS congratulates Craig on his hard work. 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 past O'Neill Tabani Enrichment Fund recipients. 


O'Neill Tabani Enrichment Fund Applications Available! 


The O'Neill Tabani Enrichment Fund offers financial assistance to adults - 18 and older - who have Down syndrome and wish to continue to enhance their lives by taking classes or enrolling in postsecondary educational programs.


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

Click here to download the application.  


NDSS 3:21 Signature T-Shirt Feedback 



NDSS is thrilled that so many of you love our 3:21 Signature T-Shirt collection as much as we do! While we're pleased that it has been so well received, we've been listening to all of your feedback along the way and we'll use it to make the next run even better. We are excited to announce that in the coming months we will be restocking the sold out kids sizes and adding larger kids sizes through 14-16! 


We are proud to partner with Rhyme&Reason Clothing to provide the 3:21 Signature line, and in addition to the new sizes, we'd like to help them best understand what you'd like to see next. If you've been wanting to give us your opinion, now's your chance! Please participate in a brief, five question survey and give us your feedback on future designs, color and style options. We look forward to hearing what you have to say!


Click here to participate in the survey. 


My Great Story Mother's Day Section


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. In honor of Mother's Day on May 13, this month we're adding to the celebration by sharing stories about moms of people with Down syndrome. If you have a child with Down syndrome or know another mom who does, share the story! Self-advocates, we especially want to hear how you're celebrating Mother's Day. 


Click here to view the My Great Story Mother's Day section.

Click here to share your story. 


My Great Story of the Month Contest 





Congratulations to Leah Gilbert of Fort Worth, TX on winning the My Great Story of the Month Contest! Leah's story received the most votes in April and she will be receiving a $50 gift certificate to 


The author of the story with the most votes in May will win a $100 gift certificate to Rhyme&Reason Clothing, the company behind the NDSS signature 3:21 t-shirts. Share your story and spread the word throughout the month to win this prize!

Click  here to share your story. 


At Rhyme&Reason, they are all about the Reason. 10% of the purchase price of every garment they sell goes directly to charity. Rhyme&Reason Clothing wants to make a positive impact for causes that you personally care about, so they offer high quality everyday clothing and a way for you to make a difference. Rhyme&Reason offers an alternative to the status quo - that's clothing with a conscience, a novel approach, and one that works. 


Click here for more information about Rhyme&Reason and to view their full clothing lines.


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.


To share your own story, visit

My Brother, My Heart

Leah Gilbert
Fort Worth, Texas


If I could tell you one thing about Tommie, it would be that he is my heart. Tommie is my brother and will celebrate his 30th birthday this year. All I know is that from the beginning I was protective over him. Mom said it was like I sensed something was different, but I wasn't quite sure what it was. 


Over the years I have watched him grow into a young man who likes to work, competes in Special Olympics, pokes fun of me, and enjoys time with his friends. I admire him for how he enjoys the simple things - like fireworks at a baseball game when a homerun is hit. He knows people are cheering, but when the fireworks go off, it's a whole new level of happiness I see in him. I tear up every time! He knows when I am upset and is there to comfort me; even if it's a tissue or a hug since he can't fully verbalize it. 


When Halloween is here, you know to look around the corner before you turn it. More often than not, he is there ready to scare you! Christmas with him is the best - innocent, childlike and loving. He likes to pick his own angel from the Salvation Army Angel Tree, and offers his own money when he hears the bells ringing outside a mall for donations. Tommie has an item in mind for everyone on his list (especially now that he is older) and will not stop until everyone has at least one item from him. He still knows to go to bed early since Santa will be there, and he buys special cookies that we can't touch because they are dedicated for that reason alone! 


There are times with him I feel like I do not know how I will handle a child because I go through the emotions of a mom - I want to take away any pain, heal his wounds, and protect him year-round. But like any other child, you have to let them grow and learn the world on their own. It has been such an honor watching him learn what he enjoys and doesn't enjoy. It is hard to put into words how or what I feel about my brother. Tommie has been an influence on me in more ways than I realize. He has been the best brother and I hope he knows how much I do love and respect him. He truly is my heart. 


Jessica's Down Syndrome Pregnancy
Jessica Weigand-Martine
Bristol, Pennsylvania


It was October 22, 2009 - the day I got a positive pregnancy test. I was only 19 years old. I told my boyfriend and he was a little nervous also. At the ultrasound, the tech looked weird the whole time and I could feel something might be wrong. A week later I got a call from my doctor who told me the blood work came back positive for Down syndrome. I could feel my throat swelling and my heart drop to my stomach. As tears dropped down my face I ran to my boyfriend's house to tell him - he was speechless. 


I went to see my doctor before my next ultrasound. He was explaining this is not a positive thing yet and gave me the option to get an amniocentesis. He explained the chance of miscarriage. I said no matter what the problem I don't want the amniocentesis.


At 17 weeks I had another ultrasound - it's a girl! I had another ultrasound at 28 weeks and this time they explained more to me. They said that my daughter has two holes in her heart, fluid on her brain and was still not growing as expected. At 36 weeks the tech told me that the baby wasn't growing. She had only gained one oz. within a month period. They called my doctor and suggested to induce labor or she might die. Way to scare a new mommy to be!


On June 2, 2010 we arrived at the hospital and they told me they didn't expect her to come until the next morning. I lay down and rested until 11:30 that night. The nurse checked me and said "oh don't worry honey, you're only dilated 5cm. so go to sleep - she'll be here tomorrow afternoon." Well, little did they know I went from 5cm. to 10cm. in one hour. I pushed For 30 minutes and out came Keela, weighing 5lb. 2oz.


I remember the doctor taking her to a pediatrician in the corner. I heard him say that she has Down syndrome features. I was prepared for it, but when everyone else heard it they were very distant from the situation. A very nice woman came to talk to us. She explained that her son has Down syndrome and everything would be alright. When we got her official diagnosis I already knew I had an angel.


When Keela was three weeks old she got pneumonia and we stayed in the hospital for five days. A few weeks later she started early intervention. I would get upset from time to time when she wasn't where other kids her age were. After a while it didn't matter because I knew she would do everything at her own pace. My baby girl rolled over at two months old - it was amazing. She held her head up at six months old. At eight months old she finally sat up on her own. She finally started to crawl at 14 1/2 months old. I was so proud of her because I knew she could do it.


Since birth Keela has been back and forth to the hospital for many appointments. She sees 11 different specialists. Sometimes it gets a bit stressful but I wouldn't change this lifestyle for the world.

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