National Down Syndrome Society E-Newsletter


July 2012  


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Times Square Video Contest:

Last Chance to Submit a Photo! 


On Saturday, September 22, NDSS will kick off Down Syndrome Awareness Month and Buddy WalkŪ season in the heart of Times Square in New York City with a video presentation featuring more than 200 individuals with Down syndrome from across the country and around the world.


There are less than two weeks left to submit your photo for a chance to be in the 2012 Times Square Video contest! We invite you to submit a photo for this one-of-a-kind feature presentation. The contest runs until 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.

Click here to watch the 2011 Times Square Video.

NDSS National Policy Center Update


Join NDSS for the July Achieving a Better Life Experience (ABLE) Act Challenge!


The cosponsors continue to grow - 165 cosponsors in the House and 22 cosponsors in the Senate - but we still need more cosponsors to help us pass the ABLE Act. Join the July ABLE Act Challenge and help NDSS reach over 200 cosponsors in the House and 35 cosponsors in the Senate by July 31, before the August Congressional recess!


Click on the links for the House and Senate to find out if your members of Congress have cosponsored this important legislation.  NDSS offers you three easy ways to contact your Senators and Representative:

  • Click here to use our call-in template.
  • Click here to use our email template.
  • Click here to set up a meeting with your Senators and Representative.

Congress will be working on a larger tax package later this year, likely in the post-November election session. NDSS is working with lead ABLE Act sponsors and staff of both the Senate Finance Committee and House Ways and Means Committee to identify a larger tax package where the ABLE Act could be added.  


U.S. Senate Confirms Down Syndrome Research Priorities


The U.S. Senate Appropriations Committee confirmed several Down syndrome research priorities in its fiscal year (FY) 2013 Labor-Health and Human Services (L-HHS) Appropriations bill and Committee's report last month. The language, which was included as report language, specifies a focus on the development of the Down syndrome clinical database, research registry, and biobank; an increase in the amount invested in investigator-driven research grants on Down syndrome and urged the National Institutes of Health (NIH) to establish workshops and mentoring programs to encourage young researchers and scientists to successfully pursue NIH grants for Down syndrome research.


NDSS worked with several members of Congress and advocated for the language's inclusion in the report. The U.S. House Appropriations Committee has not scheduled a markup on its funding bill.


Postsecondary Model Garners Support in the U.S. Senate


The Senate Appropriations Committee also approved $10.9 million for the Model Comprehensive Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID) program at the U.S. Department of Education in its FY 2013 L-HHS Appropriations bill.  NDSS has strongly advocated for this funding with Congress and the administration.


NDSS Participated in the National Transition Conference


NDSS, along with the Collaboration to Promote Self-Determination (CPSD), a coalition that focuses on the needs and interests of people with intellectual disabilities and developmental disabilities, gave two presentations at a National Transition Conference attended by over 750 people. The presentation topics were "cross-systems reform in emerging federal transition policy" and "aligning education and transition policy." The conference was supported by the New England Technical Assistance and Continuing Education (TACE) Center at the Institute for Community Inclusion, University of Massachusetts, Boston and sponsored by the U.S. Department of Education - Office of Special Education and Rehabilitative Services (OSERS). 


New Report Released on Developmental Disabilities Assistance and the Bill of Rights Act


The National Council on Disabilities recently released a report titled Exploring New Paradigms for the Developmental Disabilities Assistance and Bill of Rights Act. The report, which is a supplement to a report issued in 2011, provides recommendations to improve federal and state policy and achieve the goals of the law, particularly in challenging economic times.


Click here to read the report.


Registration Still Open for National Postsecondary Conference


NDSS and George Mason University (GMU) are sponsoring the 4th annual State of the Art Conference on Postsecondary Education and Individuals with Intellectual Disabilities on November 29 - 30 at the GMU Fairfax, VA campus.


Click here to learn about the conference and register today! 

State Policy Updates

Massachusetts Down Syndrome Advocates Pass Landmark Law on Down Syndrome Genetic Test Results

Congratulations to the Massachusetts Down Syndrome Congress (MDSC) and advocates from across MA who helped passed a new law, An Act Relative to Down Syndrome Genetic Test Results (H3825), modeled on the national Prenatally and Postnatally Diagnosed Conditions Act (P.L. 110-374), also known as the Kennedy-Brownback law. In 2008, NDSS spearheaded the effort to help pass the Kennedy-Brownback bill into law. This new law mandates that new or expectant parents of children with Down syndrome are given the latest, culturally-appropriate information about what it means to have a child with Down syndrome and contact information for services to ensure they have access to the supports that every family in their position needs. The legislation specifically identifies MDSC's Parent's First Call Program as a key resource for these families. 


Click here to read An Act Relative to Down Syndrome Genetic Test Results (H3825).

Click here to view Governor Deval Patrick and Lieutenant Governor Tim Murray's remarks.

Click here to view Representative Tom Sannicandro's (D-MA) remarks.


Louisiana Forms Statewide Down Syndrome Government Affairs Committee


On June 29 - 30, over 50 Down syndrome advocates from across the state of Louisiana met in Baton Rouge to participate in the Louisiana Government Affairs Committee (GAC) conference training facilitated by NDSS.  During the conference, participants also heard from state disability leaders from the Louisiana Parent Training and Information Center, People First of Louisiana, Advocacy Center, University Center of Excellence in Developmental Disabilities (UCEDD) Louisiana, and Louisiana Developmental Disabilities Council.  The new LA GAC will work with NDSS, as part of our national GAC program, to promote and advance state legislation for the Down syndrome community. 


Does your state have a Government Affairs Committee (GAC)? NDSS is focused on creating statewide government affairs committees united in their determination to work on key policy objectives across the lifespan of individuals with Down syndrome and other intellectual disabilities. 


Click here to email NDSS VP of Advocacy & Affiliate Relations Sara Weir If you are interested in learning more.


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.
for our July webinar as blogger, photographer and author Kelle Hampton discusses her memoir Bloom: Finding Beauty in the Unexpected. Hampton has received wide acclaim for chronicling the simple joys and challenges of motherhood through her popular blog, Enjoying the Small Things, and Bloom, a New York Times best-seller. The webinar will be on Thursday, July 26 at 1:00pm ET.


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 WalkŪ 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!


2012 Buddy Walk Registration


Registration is still open for the 2012 Buddy Walk season! Please remember that a new registration must be completed each year in order for your group to remain a part of the national program. Once your Buddy Walk registration has been received by the NDSS office, a custom license agreement will be emailed to you.  When the signed agreement is returned to the NDSS office (by mail, fax or email) your Walk registration will be processed.  When a Walk for 2012 is approved, the organizer will automatically receive emails with information on requesting free Radio and TV PSAs, posters and NDSS literature.


Click here to log in using your user name and password from last year. Once you log in, click on "Register a 2012 Walk" to complete your Walk registration. 

Click here to get started if your group is interested in organizing a Buddy Walk for the first time.


We look forward to working with you on your 2012 Buddy Walk!


Save the Date: Buddy Walk Advocacy Webinar - Thursday, July 31 at 1:00 PM ET


Join us as NDSS VP of Advocacy & Affiliate Relations Sara Weir leads a webinar titled Turn Your Buddy Walk into an Advocacy Machine, when you will learn how the National Buddy Walk Program supports the NDSS National Policy Center in Washington, D.C. The session will provide an overview of advocacy, how you can get involved at the federal and state advocacy levels, and tips on how to involve your legislature in your Buddy Walk event. The session will also highlight examples of ongoing efforts to achieve positive systems change for individuals with Down syndrome and other intellectual disabilities at the federal, state and local levels of government. Policies and advocacy efforts focus on four major areas: improving health outcomes and quality of life for people with Down syndrome; improving education opportunities; increasing opportunities for adults with Down syndrome; and creating an economic future for individuals with Down syndrome.


Stay tuned for more information!


Buddy Walk Partner Spotlight


NDSS is pleased to highlight our National Buddy Walk Partner, Down Syndrome Footprint. Established in 2009 by new parents Mike and Katia Hauser, Down Syndrome Footprint seeks a unique and universal image that both represents Down syndrome and develops awareness, empowerment and employment for individuals with Down syndrome. Down Syndrome Footprint is proud that all of its products are either made or packaged by an individual with Down syndrome.


To help support each approved Buddy Walk, Down Syndrome Footprint is offering each Walk an assortment of Down Syndrome Footprint merchandise. In addition, Down Syndrome Footprint has come up with three different ways that you can raise funds for your Buddy Walk or your organization using their merchandise risk-free.


Click here to learn more about these fundraising opportunities.


Down Syndrome Footprint continues to support the work that NDSS and Buddy Walk groups do by offering something new to all approved Buddy Walk events in 2012: 40% off store-wide for any quantity ordered! To start taking advantage of this great offer, call 877-597-0820 or click here to email Down Syndrome Footprint.


Click here for more about Down Syndrome Footprint or click here to contact Stavroula Marcell for additional information.


NDSS thanks Down Syndrome Footprint for their support of the Buddy Walk program and looks forward to continuing our meaningful partnership. 


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.


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. 


Remembering Larry Piper, Jr.



The NDSS Dan Piper Award is given in memory of Dan Piper, a pioneering self-advocate. Sadly, Larry Piper, Jr., Dan's older brother, passed away on June 3.  Larry and the Piper Family have been tremendous supporters of  individuals with Down syndrome. In 2006, Larry presented the NDSS Dan Piper Award to Self-Advocate David Egan at the 9th World Down Syndrome Congress in Vancouver, Canada.  Here, David recalls his time with Larry:


"While Dan opened the path for inclusion, Larry lived by the slogan 'One of Us and Not One Among Us' every day of his life. During the few days that we spent together in Vancouver, he treated me as a friend.  He was interested in learning about me, my work, my hobbies, sports, and life in general. Larry was charming and attentive. I have fond memories of our conversations and learning about two brothers bonded in a cause to help others.  We had a good time, he sat next to me to chat and I was not a person with Down syndrome for him, but a friend who reminded him of his brother Dan." 


NDSS expresses our sincerest condolences to the Piper Family and thanks them for their sons' contributions to the Down syndrome community. 


Click here to read David's tribute to Larry in its entirety. 


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 in the media this month. Here are some of our local and national placements: 


In Decatur, IL The Herald Review covered the Macon County Strides for Down Syndrome
Buddy Walk.
Click here to read the article. 



In Chicago, IL ABC aired a segment featuring Bridget Brown, recipient of the 2012 NDSS Self-Advocate of the Year Champion of Change Award at the Buddy Walk on Washington.
Click here to watch the segment.  


In Boston, MA ABC aired a segment featuring John Anton, recipient of the 2010 NDSS Self-Advocate of the Year Champion of Change Award at the Buddy Walk on Washington.

Click here to watch the segment and use the links below to watch the other parts of this series.

Click here to watch Down Syndrome: One Family's Decision.

Click here to watch Down Syndrome: Equal Treatment.

Click here to watch Earlier, Easier Down Syndrome Test.

OK! Magazine interviewed Jane Lynch at the NDSS Spring Luncheon. 
Click here to read the interview. 


Ology covered Jane Lynch at the NDSS Spring Luncheon and featured a photo of her with

NDSS Goodwill Ambassador Chris Burke.

Click here to read more. 

Education Week quoted NDSS National Policy Center Associate Director of Education Ricki Sabia in an article about charter schools and the needs of students with disabilities.  

Click here to read the article.



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








Kayla's Court










Like us on Facebook Click here to find NDSS on Facebook.

Follow us on Twitter Click here to find NDSS on Twitter.  

Find us on Pinterest 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". 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.  

It's Summertime


Since I was growing up I have always loved going to the beach. My parents and I spend our summers in Long Island, NY. We move to Point Lookout, where we live by the beach. We always have a good time.  When I was younger my brother and sisters and I liked to play around in the sand and build caves and sand castles. This how my parents and my family formed early intervention for me.  My dad taught me how to swim in the ocean and I learned how to use my arms and legs.  He was my swimming coach.  But I really learned how to swim from my mom when she would give me baths in the "little tubby" and I would kick my legs and swing my arms. Now I'm an adult and I still go to the beach at my summer home in Point Lookout. 


In the summertime, I love going to the movies, seeing live concerts at the beach, going to Skipper Dee's Lil Ice Cream Shop and helping my dad around the house - inside and outside. I also like going to Marybeth's Ice Cream Truck to get anything I want. 


I want to say have a great summer.  


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.  



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


In addition to thanking PinMart for their partnership, we want to thank all of the individuals, families and affiliates that chose to support NDSS by purchasing awareness products from PinMart. A portion of your purchase is counted towards their donation total.


PinMart also extends a discount to all NDSS affiliates and individuals who enter promo code "NDSS" at checkout.


Click here to visit the PinMart website and to purchase Down syndrome awareness products. 


NDSS Your Way


NDSS Your Way launched on May 1 and we continue to be inspired by so many of your campaigns. Thank you for your enthusiasm! This online fundraising program invites you to compete, celebrate and create with us. NDSS Your Way is geared towards independent fundraisers interested in raising money on behalf of NDSS. Participants 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.


Special shout out to Team NDSS Athlete John Traweek, who has more than doubled his initial fundraising goal and is nearing his current goal of $2,600! On July 15, he will compete in Ironman 70.3 Wisconsin. The race consists of a 1.2 mile swim in Lake Michigan, a 56 mile bike ride and finishes with a 13.1 mile run. John's motivation behind his NDSS Your Way campaign is his nephew Zachary. Way to go, John!  Thank you, and good luck!


Click here to check out John's NDSS Your Way fundraising page in honor of Zachary. 


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

Click here to email us with questions and comments.


Spring Appeal: Featuring the Rubright Family


Many of you reached out to NDSS after you read our spring appeal featuring the Rubright Family. We loved hearing your stories about the relationships between siblings in your own homes and also about your own advocacy work, specifically in the area of inclusive education.  

We also appreciate those of you who posted our article on your websites, forwarded it to your contacts, blogged about it, liked it on Facebook, and retweeted it to your friends.

Special thanks to those of you who were moved to make a donation to NDSS in response to our spring appeal. We are grateful to work hand in hand with so many supporters who help us continue to advocate for the value, acceptance and inclusion of people with Down syndrome. 


"AnnaRose and Rachael are not special because they have Down syndrome; they are special for reasons much greater than that. Take a look!" - Lin Rubright

Click here to read the 2012 NDSS spring appeal letter featuring the Rubright Family.

Click here to support the NDSS spring appeal. 


NDSS Spring Events Exceed Expectations!

NDSS Spring Luncheon Raises Over $120,000!



On June 6, 275 friends and supporters gathered together at 583 Park Avenue in New York City to honor and celebrate the accomplishments of individuals with Down syndrome and those who contribute to the Down syndrome community. In addition to the priceless moments experienced in the room that afternoon, it is thrilling to report that this event raised over $120,000.


Very special thanks to Barnes & Noble and the Riggio Family for their ongoing leadership and support of this event. We wish a hearty congratulations to our honorees: Emmy-Award winning actress Jane Lynch, who was honored for celebrating diversity and advocating for people of all abilities, and Self-Advocate Diana Stolfo, who was honored with the Melissa Riggio Voices Award for being an extraordinary young woman with Down syndrome who is making a difference in her community.


Additional thanks and recognition goes out to the speakers and presenters: Kristine Johnson from CBS2 News; Steve, Laura and Christina Riggio on behalf of the Riggio Family; Self-Advocate Lauren Danis; and Self-Advocate Allison Haines.  Allison kindly donated a photograph from her portfolio that was featured on all of the Luncheon printed materials and on Jane Lynch's award.


Click here to view a video message from Actress Lauren Potter to her friend and co-star Jane Lynch, which aired at the Luncheon.

Click  here to view a video of Jane Lynch's speech. (Note: This is an amateur recording from the audience.)

Click here to view photos from the Spring Luncheon on the NDSS Facebook page.


NDSS 16th Annual Golf Outing Raises Over $370,000!


(Left to right) NDSS Board Chair Chip Gerhardt, Green Bay Packers Athletic Trainer Nate Weir, Self-Advocate and Golf For Life Founder Brad Hennefer and Green Bay Packers Linebacker A.J. Hawk 

At the sold out NDSS 16th Annual Golf Outing on June 18, 200 golfers gathered together at the championship Baltusrol Golf Club in Springfield, New Jersey to enjoy a great day on the Lower and Upper Courses in honor and support of the NDSS mission.


The outing was co-chaired by Meghan and Rob Cioffi, whose 12-year-old daughter Molly has Down syndrome and is their inspiration for being active with NDSS.  The outing was attended by Green Bay Packers Linebacker A.J. Hawk, who joined us in honor of his late aunt who had Down syndrome. 

NDSS thanks Presenting Sponsor, Dinosaur BBQ, for their generous support of this event, and all of the other sponsors and participants that helped to make this event successful. Special recognition goes to NDSS' first all-female foursome to win the first place net total score (Upper Course) with a 54. Congratulations Janice Bell, Meghan Cioffi, Steffi Loomis and Mimi Walsh!    


Click here to view photos from the event on the NDSS Facebook page.

Click here to view funny foursome photos from Tournament Sponsor, Featherstone Design.


Scholar Spotlight


Each year, NDSS awards postsecondary scholarships to students with Down syndrome through the O'Neill Tabani Enrichment Fund. In 2011, 12 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.


Sam Zdancewicz of Springfield, PA received a grant through the O'Neill Tabani Enrichment Fund. He attends Shepherd's College in Union Grove, WI and was able to participate in the 2012 Dream BIG Chicago fundraiser for the O'Neill Tabani Fund this past World Down Syndrome Day, where he gave a presentation on how the Fund is helping him reach his goals.  Sam shared the following about what attending college means to him:


"The reason I want to continue to go to Shepherd's College is so that I can grow in independence and to live on my own. I want to be able to get a job and earn money for my future. I really enjoy interacting with the people at college and working both independently and in a group.  It is teaching me skills to communicate better with my fellow students.  The reason why I always wanted to have an education is to learn to be me and to have a place to be me - to learn what God taught me and brought me - a place to be friends and make friends - a place of comfort and focus and learning.  Learning is a joy and it is a joy being at Shepherd's College." 


NDSS congratulates Sam on his hard work. He 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. 


O'Neill Tabani Enrichment Fund: Deadline Approaching!


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, which is due by July 13. 


Gaps in the Maps Project


Help Fill in the Gaps: 

All Families Deserve Access to Support and Information!

Have you or a friend had a difficult time finding a Down syndrome support group when your child was first born or when moving to a new area? We're determined to change that. NDSS has partnered with Down Syndrome Affiliates in Action (DSAIA) and the National Down Syndrome Congress (NDSC) to ensure that all families have access to support and information from a local Down syndrome affiliate through the Gaps in the Maps Project.


We invite you to get involved!

- Click here to complete a brief survey by July 31.  

- Share the survey link with all your friends on Facebook and Twitter!

- Talk about this project with at least one family or organization in the Down syndrome community. 

- Be creative... the more ways we share this project, the more families will receive the support and information they deserve!


Click here for all the latest project details.

Click here to contact DSAIA Executive Director Deanna Tharpe via email, or call 701-425-7129.


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 Amy Wright of Wilmington, NC on winning the My Great Story of the Month Contest! Amy's story received the most votes in June and she will be receiving four nonfiction books from William Morrow, including an autographed copy of Kelle Hampton's Bloom: Finding Beauty in the Unexpected. 


The author of the story with the most votes in July will win a $100 gift card to Brooks Brothers. Share your story and spread the word throughout the month to win this prize!

Click here to share your story. 


As the country's oldest clothing retailer, Brooks Brothers is proud to uphold the same traditions and values for nearly two centuries. Brooks Brothers is often passed from one generation to the next. More than a store; it is an American icon. They offer premier clothing for the whole family: men, women, girls and boys. 


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!

It Starts with a Voice

Amy Wright
Wilmington, North Carolina


Beau and Bitty are best friends. They are biological siblings who happen to both have Down syndrome. They love the beach, dancing to music, reading books and just hanging out with each other and our family. Beau and Bitty's two older sisters, Lillie and Emma Grace, are helping us promote our family's mission to help spread a message of inclusion and acceptance. Their mission has led us to write and record a song called "It Starts With A Voice." We recently debuted the song at a benefit concert we organized in Wilmington, NC where 100% of the concert proceeds were donated to the Special Olympics "Spread the Word to End the Word" campaign. Both Lillie and Emma Grace hosted the concert and shared with the audience their heart-filled message of the importance of respect. Our family's mission continues, as the song is now available for download on iTunes, where a percentage of each sale will be donated to the same cause. This summer, we will travel to several national conventions including the National Down Syndrome Congress Convention, Best Buddies International Leadership Conference and the Annual APSE Conference, where we will perform the song, "It Starts With a Voice." This is just the beginning of the our family's journey to help "Spread the Word to End the Word" by sharing this song and our message with the world. 


An Older Sister's Appreciation
Kara McDowell
Pittstown, New Jersey

I have lived, breathed, and experienced everything there is to experience with a person with a disability. I would not change my experiences for the world, and I would never wish my brother to be any different. I cannot put into words how I feel about Mattie. He is by far the most amazing individual I have ever met and knowing him has made me the person I am today. I cannot imagine my life without him in it and I am convinced that he was placed into mine and my family's life on purpose.


He makes every day happier and more exciting. When he accomplishes simple feats I feel more joy than if I were to accomplish something. My knowledge has grown from being related to Mattie. He has taught me about being happy through adversity, accepting others, and working hard. I have never met a person has joyful as him, he lights up a room when he walks in with his huge smile and his uncontrollable laughter. 


Mattie loves and accepts everyone he meets. He will greet you with a hug the first time he meets you and once you become a regular to him, he will kiss you on the cheek. He has never once judged or mistrusted an individual and I think he sees into the soul of every individual he encounters. Mattie works so hard to learn things that we take for granted. 


He strives in school and at home, and puts up little resistance to work. He cleans up the shelves in the shoe department of TJ-Maxx with a huge smile on his face, and he runs old papers through the shredder at the prosecutor's office with joy. I have never had any stereotypes for people with disabilities but I can say that Matthew has changed other people's stereotypes. He touches every heart of every person he meets. He is a charmer and you cannot help but fall in love with him. The people who judge him and call him names do not know what they are missing out on. Not only are they ignorant, but they will never be able to have their lives touched without opening their heart and getting to know him. I have watched kids call my brother a retard and laugh at him and everywhere we go in public people still stare at him. My brother and I have become very protective of Matthew and are not afraid to say something. 


I cannot describe everything that Mattie has done for me. He has made me the person I am today by helping me find my career path, by shaping my character values, and by teaching me about humanity, compassion, and equality. I wish that everyone could have the chance to spend a day with him, because I know that spending a lifetime with him as changed me forever. He is my best friend, my favorite person on this earth, and the voice behind every decision I make.

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We look forward to hearing from you!