National Down Syndrome Society E-Newsletter

       

November 2011

 

   

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Join NDSS for the Buddy WalkŪ on Washington 

February 29 and March 1, 2012 

         

The Buddy WalkŪ on Washington is an annual two-day advocacy experience, which brings the Down syndrome community together to advocate for public policies that impact the lives of people with Down syndrome and their families. Participants come face-to-face with members of Congress and their staff to encourage them to advance education, research and healthcare for people with Down syndrome. Attendees will participate in an interactive advocacy training, attend a celebration and advocacy awards dinner and spend a day on Capitol Hill. The experience is perfectly suited for self-advocates, family members, professionals, affiliate leaders and members, and anyone else who wants to make a difference for people with Down syndrome.

This year, NDSS has partnered with Down Syndrome Affiliates in Action (DSAIA) to bring all DSAIA conference attendees to the NDSS Buddy WalkŪ on Washington. DSAIA and NDSS are holding the annual events concurrently in 2012, allowing anyone who wishes to attend both events to save on travel cost and time. The partnership was established to maximize the power and presence of the Down syndrome community on Capitol Hill. 

 

Click here to learn more.

 

 

NDSS National Policy Center Update

New Virginia Governmental Affairs Committee Organized 

The NDSS National Policy Center team joined with leaders from five affiliate groups in Richmond, Virginia in a training conference to develop a Governmental Affairs Committee (GAC) focused on improving public policy for individuals with Down syndrome and their families in the state. The Down Syndrome Associations of Fredericksburg, Greater Richmond, Hampton Roads, Northern Virginia and Roanoke agreed to formalize a coalition and determined policy priorities.
Click here for more information about NDSS Governmental Affairs Committees.
  
U.S. Congressional Down Syndrome Caucus Briefing
  
A briefing for the U.S. Congressional Down Syndrome Caucus on Down Syndrome Research was organized by Congresswoman Cathy McMorris Rodgers. The briefing was intended to assist the Congressional Down Syndrome Caucus in developing policy priorities. Presenters focused on the unique biology of Down syndrome, current research efforts in Down syndrome (including the National Institutes of Health, NIH, and privately funded efforts) and barriers to Down syndrome research. One theme underscored by several presenters, including NDSS National Policy Center Director Madeleine Will, is that infrastructure tools, such as a Down syndrome patient registry and biobank, are required to leverage research that will benefit people with Down syndrome and the general public.
  
First Meeting of the National Institute of Health (NIH) Down Syndrome Consortium 
   
An historic first meeting of the Down Syndrome Consortium recently took place in Washington, D.C. The Consortium was created to facilitate discussions regarding Down syndrome research and provide for ongoing implementation of the long-range NIH Down syndrome research plan. Since NDSS sponsored a roundtable on Down syndrome research in 2010, NDSS has pursued the creation of a public/private entity focused on Down syndrome. The Consortium is sponsored by NIH's Child Health and Development Center (NICHD) and comprised of approximately two dozen representatives of Down syndrome stakeholders groups, such as researchers and other experts in the field, family members, self-advocates, leaders of professional Down syndrome organizations and members of the Trans-NIH Down Syndrome Working Group.  NDSS President Jon Colman attended the meeting and will represent NDSS as a key stakeholder in the Down syndrome community. When asked about the meeting, Colman praised the leadership of NICHD for its commitment to developing the infrastructure necessary to strengthen Down syndrome research. He indicated that he was pleased to be named chair of the Contact Registry Subcommittee and eager to begin examining ways of organizing such a registry - a voluntary list of people who are interested in being contacted to participate in research.
Click here to see the NICHD press release.

Tips to Protect Students With Disabilities in Waiver Requests to the U.S. Education Department
    
At the end of September, the U.S. Department of Education announced its program to allow State Education Agencies (SEAs) to waive key requirements of the Elementary and Secondary Education Act (ESEA - formerly the No Child Left Behind Act, NCLB). These waivers could have a potentially devastating effect on the degree to which states, schools and districts are held accountable for the academic achievement of students with disabilities. The key to protecting these students is to have input in the development of the state Flexibility Request in which the waiver terms are described. SEAs are required to consult with stakeholders, which would include organizations representing students with disabilities. In order to help these organizations with this consultation, NDSS, together with The Advocacy Institute, has developed a document that provides tips for providing input on the Flexibility Request.
Click here to view the document.

Elementary and Secondary Education Act (ESEA - Formerly No Child Left Behind) Bill

On October 11, Senator Tom Harkin (D-IA), Chairman of the Senate Health, Educations, Labor and Pensions Committee, posted a draft bill amending ESEA/NCLB. We were pleased that the National Universal Design for Learning (UDL) Task Force, chaired by NDSS, was successful at incorporating numerous provisions promoting UDL in the bill. However, there were still serious issues with the bill regarding the elimination of federal mandates for measuring student achievement and interventions in 95% of the nation's schools, the lowering of standards for highly qualified teachers, and the inclusion of harmful provisions governing Alternate Assessments on Alternate Academic Achievement Standards (AA-AAS). We expressed our concern about the first two issues in letters from the coalitions to which we belong.
   
In addition, NDSS worked closely with Senator Harkin's staff to make some important changes to the draft bill, which specifically relate to students with intellectual disabilities, before he offered it to the HELP Committee for "mark up" (a process by which the Committee makes any additional amendments). As a result of this advocacy, the bill considered by the Committee requires parent involvement in determining who will take an AA-AAS, ties the AA-AAS more closely to access to the general education curriculum, and requires universally designed regular assessments so more of these students do not have to take the AA-AAS. In spite of these changes, NDSS still had serious enough concerns about this version of the bill to sign on to a statement that we cannot support the bill at this time.
Click here to view the statement.
  
On October 20, the HELP Committee passed the ESEA (formerly NCLB) Reauthorization Bill with a number of amendments. Fortunately, the Isakson amendment, which would have lifted the cap on the use of alternate assessments, was defeated with the help of all those who responded to the NDSS action alert. However, an amendment on highly qualified teachers that we opposed because it loosened teacher preparation requirements was passed and one that we supported was defeated. The NDSS National Policy team will review the Committee bill in its entirely once it is posted online. A number of amendments to the ESEA were accepted by the HELP Committee. These must be analyzed carefully to understand their full implications. Earlier reviews suggest that several of them will do harm to students with intellectual disabilities, and our overall concern remains that the bill may codify low expectations for students taking alternate assessments.
  
Collaboration to Promote Self-Determination Coalition
  
The Collaboration to Promote Self-Determination (CPSD), a coalition that NDSS co-founded, continued to meet with members of the joint House and Senate "Super Committee," which is attempting to reach an agreement on deficit reduction and other important fiscal matters. The ideas for which CPSD representatives advocate are receiving careful and serious consideration in these meetings. CPSD calls for holistic reform of the adult system of supports and services for individuals with disabilities, particularly intellectual disabilities. Changes CPSD seeks include: giving parents and individuals with disabilities like Down syndrome the ability to control the public resources they receive from different programs in ways that result in employment at minimum wage or better and independent living; and embedding Employment First principles and language in key laws like Medicaid to ensure that public dollars are used to reimburse provider agencies that place people in employment at a higher rate than those who place people in sheltered workshops at subminimum wage.
 

 

Sign up to Receive Important Policy Action Alerts

Be an Advocate!

 

You can help make a difference in the lives of people with Down syndrome through advocacy! Whether you aren't sure who your local elected representatives are or you are a seasoned advocate, there are many ways for everyone to get involved.

 

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

 

New Prenatal Test for Down Syndrome

On October 17, a new prenatal screening test, MaterniT21, was made available by the company Sequenom.    

   

Click here for more information on this and other prenatal tests.

This new prenatal test for Down syndrome hit the market in 20 cities nationwide, which promises to deliver the most accurate and earliest probability assessment of a positive diagnosis for Down syndrome in a pregnancy. NDSS has updated its information for families and experts based on this new development to include criteria to evaluate companies with non-invasive prenatal diagnostic tests for Down syndrome. NDSS appreciates that these tests are likely to be safer for pregnant women than the current invasive options of chorionic villus sampling and amniocentesis. However, before these new tests are made commercially available, companies should first meet certain criteria to ensure that all doctors and expectant parents receive up to date and accurate information about the test and its results.

Click here to read more about these criteria. 


On November 2, NDSS will join Down Syndrome Affiliates in Action (DSAIA) in hosting a webinar titled The Impact of New Prenatal Screening at 1:00pm ET. NDSS National Policy Center Director Madeleine Will, NDSS Board Member Dr. Brian Skotko and DSAIA Informed Decision Making Task Force Chair Mark Leach will present information about the new test, how and where it is currently being administered, the efforts happening at the highest level of government and resources available to keep you informed and inform others.  

  

Click here for more information and to register. 

 

Support NDSS Through Twibbon

 

Show Your Support with the NDSS Twibbon!

 

Over 400 people have added the NDSS pic-badge to their profile pictures on Facebook or Twitter! By adding the badge, also known as a Twibbon, they are supporting NDSS and raising awareness for people with Down syndrome to all who see their profile pictures.  

 

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

Buddy WalkŪ News

To learn more about the National Buddy WalkŪ Program and to find a local Walk in your area visit www.buddywalk.org

 

Buddy Walk Success Stories

 

Each Walk has its own unique story to tell and leaves indelible memories on their participants. Over the next few months, we will be sharing Buddy Walk success stories. Our first story is one of the Opheim Buddy Walk in Opheim, Montana. It was organized (in a very short period of time) by Janet Bailey and Sally Fuhrman. Here is what they had to say about it:  

 

"Opheim held its 1st Annual Buddy Walk on Wednesday, October 12, with 78 people taking part in the Walk. The Walk started in front of the Opheim High School where almost all of the 45 enrolled students and 11 teachers and administrators joined 26 people from this community for the one mile walk around the perimeter of the town. This was a very good turnout as the population of the entire town of Opheim is only 80.

 

One person said that the smiles on the faces of those four individuals with Down syndrome made the Walk worthwhile.

 

There are only four other Buddy Walk events in Montana. They were in Great Falls, Billings, Missoula and Bozeman, the four largest cities in the state of Montana. We were excited to bring the Buddy Walk to our small town and look forward to making it a bigger event next year."
  
To have your Buddy Walk success story included in an upcoming e-newsletter, please click here to email it to Becky Switalski, National Buddy Walk Director - and don't be afraid to brag!

 

Buddy Walk Firsts

  

2011 marked some very unique happenings at local Buddy Walk events. In Villanova, PA, the Children's Hospital of Philadelphia's 10th Annual Buddy Walk and Family Fun Day featured an ice sculptor who created a beautiful work of Buddy Walk art out of a block of ice.     

The 10th Annual Manasota BUDS Buddy Walk in Bradenton, FL celebrated the Buddy Walk in a big way - by hiring a skywriter to write the words "Buddy Walk" in the sky prior to the event. Looks like a picture perfect day! 

 

 

Have a first of your own to share? Click here to tell us about it! 

 

2012 Buddy Walk Conference

The 2012 National Buddy Walk Conference will be co-sponsored by the Massachusetts Down Syndrome Congress. Stay tuned next month for a save the date and more information on our 4th annual Conference. We'd love to hear your thoughts on what you'd like to see included - click here to share your ideas.

Stay Connected

NDSS has many ways to stay up to date on all the latest Buddy Walk news: on Facebook, Twitter and the Buddy Walk blog. Thank you to everyone who has shared your photos and highlights and with us. We look forward to receiving more! If you have suggested topics for the Buddy Walk blog or would like to be a guest blogger, please click here.  

 

My Great Story Buddy Walk Section! 

 

 

   

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

The Buddy Walk blog posts stories from the My Great Story campaign on Buddy Walk Wednesdays - share your story for a chance to be featured! Click here to check out the Buddy Walk blog.

 

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

 

Buddy Walk Organizers:  

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

Buddy WalkŪ in the Media

Many local Buddy WalkŪ organizers do a great job of reaching out to their local media outlets and getting coverage for the Walks. We do our best to track all of these placements and they're always great to see! Please click here to contact NDSS Communications Associate Jordana Stern to share a local article or segment from you Walk.

 

NDSS works with national media outlets to spread the word about the Buddy Walk program, especially during Down Syndrome Awareness Month. Here are some of the outlets that covered the National Buddy Walk Program:

 

About.com included BuddyWalk.org as its site of the day in its Children

With Special Needs Section. 

Click here to view the post. 

 

Bella Online covered the Buddy Walk in its Children with Special Needs

Site.

Click here to read the article.  

 

 

Parents Magazine's Kara Corridan wrote an article about the Buddy Walk and her uncle, NDSS Goodwill Ambassador Chris Burke! 

Click here to read the article.  

 

Mothering Magazine posted about the Buddy Walk on its Facebook

page.

Click here to view the post.

 

 

 

 

 

Modern Mom Magazine interviewed Chris Burke and wrote about his involvement with the Buddy Walk.

Click here to read the interview.

 

USA Today highlighted NDSS' Down Syndrome Awareness Month initiatives, including the Buddy Walk, in its Charity Spotlight Section.

Click here to view the ad as posted on our Facebook page.

 

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.  


 Cooper Classic

 

In the summer of 2010 Lawrence Goldstein and his wife, Lindsay Heit, let us know that they were planning a fundraiser for NDSS in honor of their nephew, Cooper, who was five months old and lived in a different city.  They wanted Cooper and his family to know that he is valued and loved, and they also wanted to raise awareness about Down syndrome among their friends and colleagues.   

 

Lawrence and Lindsay planned the Cooper Classic, an October softball tournament in New York City's Central Park and raised over $5,000. As we got to know them during the planning process, we admired their commitment to making sure that Cooper is given every opportunity to enhance his quality of life and become a valued member of our society. It is because of this that we selected Cooper, his parents, Tabitha and Jeremy, and his brother, Reece, to star in the NDSS production, Milestones.

One year later, Lawrence and Lindsay planned the second annual Cooper Classic setting their goal $1 higher than they raised in 2010. They blew past it - raising nearly $8,000 this year!

Since Lawrence and Lindsay's first child is due on December 21, they decided to include a "baby pool" as part of their fundraising efforts. They charged $5 per entry and 182 guesses were submitted - date, time, gender - half of the money raised from each entry will be donated to NDSS. In addition, any donation over $5 will go directly to NDSS. This innovative idea increased their number of donors from 115 to nearly 300 people.

Please join us in recognizing the tremendous motivation and commitment of Lawrence Goldstein and Lindsay Heit, the co-founders of the Cooper Classic. And, please join us in wishing them well as their family grows.

Click here to view their fundraising page.
Click here to learn more about planning your own fundraiser.

 

Shop NDSS: Rhyme & Reason Clothing 

  

 

NDSS is proud to partner with Rhyme & Reason, a Connecticut based company that believes a percentage of everything we purchase should be donated to a charity of our choice. At Rhyme & Reason, instead of spending a lot on celebrity endorsed marketing campaigns, they concentrate on making high quality clothes with minimal branding and allow their customers to give back to society by donating a percentage of each purchase to the charity of their choice.

They had us at "hello." We wish more companies felt this way!

To kick off this Shop NDSS partnership, Rhyme & Reason chose to give NDSS a $4,700 contribution. They felt the gift to NDSS could make a meaningful impact. It was made in support of all they had learned about people with Down syndrome in many conversations with NDSS. We are honored!

Rhyme & Reason clothing can only be purchased online. At the checkout, select National Down Syndrome Society and 10% of your purchase will be donated to us. Customers that use the code NDSS15 will receive 15% off their purchase and free shipping from now until the end of the year.

New products will be added to the collection over time and stay tuned for a signature NDSS t-shirt that is coming very soon!

Click here to visit the Rhyme & Reason website.
Click here to visit Shop NDSS. 

 

Come Together for a Cause

NDSS is seeking people from across the country to join us in an effort to plan multiple events in multiple cities on Wednesday, March 21. We have chosen this specific date because it not only provides you with plenty of time to prepare, but it is also World Down Syndrome Day! Some of the events that are in the works are: 

  • In New York City, our Young Leadership Committee will be hosting a bar party to raise money for NDSS. The 2011 NDSS Times Square Video will be played on all of the screens in the bar during the party.
  • NDSS VP of Marketing Julie Cevallos is going to bring cupcakes decorated with yellow and blue M&Ms to her daughter Nina's class in Connecticut.
  • Florida mother of three, Shannon Blaeske, established an online campaign in honor of her daughter Fiona - titled the 3.21 Project. She set up a fundraising page with NDSS and promotes it on her blog. She is also currently putting together a golf outing for March 21 in southwest Florida. 

Consider starting an event in your area in honor of World Down Syndrome Day and raise money for NDSS - be creative! Click here to contact NDSS VP of Development Pam Sandonato to share your thoughts and learn how you can help make a difference your own way.


Stay tuned for details about a Twitter party using #321 on the night of these events.

 

Scholar Spotlight 

 

Each year NDSS awards postsecondary scholarships to students with Down syndrome through the Joshua O'Neill and Zeshan Tabani Enrichment Fund. In 2011, twelve outstanding students received grants to help cover the cost of their postsecondary or enrichment courses. Recipients of the 2011 Joshua O'Neill Zeshan Tabani Enrichment Fund were invited to write about their experiences as students.

 

Marissa and her instructor, Matt Dostal

Marissa Erickson, a 2011 Joshua O'Neill and Zashan Tabbani Enrichment Fund recipient, is 20 years old and lives in Alameda, California. Marissa attends her local school district Adult Transition program. She also has the opportunity to attend college classes at the local community college to continue building her academic skills. Marissa works at the local movie theater, volunteers in a high school special day class and participates in Special Olympics. Her true passion in life is in the creative arts. She loves dancing, singing, drama and painting. Marissa was thrilled to be one of the recipients of the Joshua O'Neill and Zeshan Tabani Fund grant. She is using the funds to attend a wonderful art studio called Creative Growth. At the studio, she works side by side with artists and has the opportunity to explore different art mediums. Her teacher, Madelyn Covey, says, "Marissa is energetic, enthusiastic and adventurous. She is a prolific artist and open to new ideas and new mediums. Marissa is a wonderful artist and a great student." What Marissa loves best about the art studio is that they have many art shows throughout the year that display all the art creations and list it for sale. She says, "I love when people come and see my art. My art is a part of me and they can buy it from me."

When she is not at the art studio, Marissa enjoys taking keyboard and singing lessons. She is also in a drama group and will play the part of Belle from "A Christmas Carole." Marissa also helped start, and is a moderator for, an online fan club for James Durbin from American Idol. She says, "He is a hero to me and makes me want to sing." 

Her future plans include attending post-secondary education at Fresno State University in the Wayfinders Program. Marissa looks forward to living in student housing, attending football games and continuing her love of the Dramatic Arts by taking art, dance and public speaking classes.  

  

Click here to watch Marissa in a short documentary that was filmed over the summer at Creative Art Growth Studio. 

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

 

Remembering Dr. Allen C. Crocker, NDSS Honorary Board Member 

 

  

 

Allen Carrol Crocker, M.D., 85, of Natick, MA (and Gloucester, MA) passed away peacefully on Sunday October 23, at Newton/Wellesley Hospital from respiratory failure, several months after surgery to treat a non-malignant brain tumor.

Beloved husband of 58 years to Margarete Crocker of Natick (and Gloucester); devoted father to Elli Crocker Morse and her husband, John Morse, of Newton, MA, Philip Crocker and his wife, Nina, of Irving, TX, and Monica Doyon and her husband, David, of Oxford, MA. He was so proud of his nine grandchildren: Rita, Sonya, and Irene Crocker; Kelsey, Ethan, and Chloe Doyon; and Alexander, Brittany, and Evan Morse. Allen also leaves many extended family members in Germany and England and elsewhere in the U.S.

Allen was born on Christmas Day, 1925, in Boston, MA, to Ernest and Frieda Crocker. He was a graduate of Belmont High School, M.I.T (1944), and Harvard Medical School (1948). He served in the U.S. Army Medical Corps as a first lieutenant and captain from 1951-53 and was stationed in Nurnberg, Germany. It was there he met his wife, Marga.

Dr. Crocker began his clinical training in pediatrics at Children's Hospital in Boston in 1948 and continued in his medical practice at the hospital until his retirement in June 2009. He was director of the Developmental Evaluation Clinic from 1967 - 1993 and Program Director of the Institute for Community Inclusion from 1993 - 2009. He was a pioneer in the field of developmental pediatrics. He wrote scores of articles and book chapters on genetic diseases and developmental disabilities, and co-authored and edited several seminal books in the field: Developmental-Behavioral Pediatrics (now in its 4th edition), Medical Care for Children & Adults with Development Disabilities (now in its 2nd edition), and HIV Infection and Developmental Disabilities. He was a Senior Associate in Medicine at Children's Hospital from 1966 - 2009. In addition to his clinical practice, he was Associate Professor of Pediatrics at Harvard Medical School and Associate Professor of Society, Human Development & Health at Harvard School of Public Health. He cherished his role as teacher and mentor.

Dr. Crocker served on several editorial boards for publications such as the Down Syndrome Quarterly and the Journal of Religion, Disability, and Health; as well as sitting on the boards of many non-profit agencies and consumer groups including the Boston College Campus School, Ironstone Therapy, Inc., National Down Syndrome Congress, National Niemann-Pick Disease Foundation, and National Tay-Sachs and Allied Diseases Association. He also was on several advisory councils for state agencies including the Bureau of Family and Community Health (Dept. of Public Health) and the Governor's Commission on Mental Retardation. He was the recipient of numerous lifetime achievement awards and several awards are named in his honor (e.g. the Allen C. Crocker Award is given at each annual meeting of the New England Regional Genetics Group and a similar award is presented through the Massachusetts Down Syndrome Congress each year).

Allen was a lover of poetry, art, music, literature, oysters, wine, and nature (he could identify almost every native plant, marine invertebrate, and insect species) - and he liberally shared his passions with others. He found comfort and peace sitting on the deck in Gloucester with a view of Niles Pond and Brace Cove. Allen's lifetime motto (taken from his days as an Eagle Scout) was, "Leave the campsite better than you found it." This he certainly did. The world is better for his presence.

 

My Great Story of the Month Contest 

 

  

 

Congratulations to RuLinda Krasovic, Denison, TX, on winning the My Great Story of the Month Contest! RuLinda's story received the most votes in October, and she will be receiving a beautiful collection of B. toys!

In November, the author of the story with the most votes will win a $50 gift certificate to ShoeBuy.com. Share your story and spread the word throughout the month to win this prize!

Click here to share your story. 

 

Shoebuy has the largest selection of women's, men's and kids' shoes. Choose from over 1,100 brands, 1,000,000 products, the most styles per brand and the most up-to-date fashions. Shopping for shoes at Shoebuy is Risk-Free. Plus, enjoy Free Shipping and Free Return Shipping on U.S. orders. 

 

Click here for more information about ShoeBuy.


My Great Story: Stories of the Month

 

Each month, the two stories with the most votes on the My Great Story site are featured as the Stories of the Month. The votes are reset at the end of each month.

To add your own story, or to vote or comment on others, visit www.ndss.org/stories.

World Peace
RuLinda Krasovic
Denison, Texas
 

 

Rylan Blaise came into our lives 13 months ago, but we can't remember life without him. I'm the honorary step-grandmother of Rylan, who has Down syndrome, and along with my husband, daughter, two sons, Rylan and his mother, we make an interesting bunch. He came from an unplanned pregnancy to a young single mother. Each day brings more joy and love, which is given abundantly from him. As he is learning to army crawl, point to his nose, sign "more," "eat" and "all done," he always stops to dance, laugh and give kisses. His smile lights up a room! When we are out in public his personality is contagious. He makes everyone smile and laugh. On a recent trip to the grocery store my youngest son, was waiting with Rylan on a bench while I shopped. When I finished and was approaching them I couldn't help but notice an elderly man sitting next to them. He was watching Rylan and my son interacting and the joy on this man's face brought tears to my eyes. It lit up his entire face, his eyes were so bright! This is the effect one little boy has on so many people. As we were leaving my son, who is 15, said, "Everyone should have a Rylan, he would bring world peace." I couldn't help but to agree. 

 

Ethan's Entourage
Erica McCormick
Fort Dix, New Jersey

 

Congratulations, Erica, for submitting this month's 

top voted story in the Buddy Walk section!

  

I am a mother of a 6 year old boy named Ethan who has Down syndrome. When he was born we did not know he had Down syndrome until a few hours after he was delivered the doctors came in and told me; my response was "special babies were born to special people." He puts a smile on everyone's face that he meets. He brings out the good in people and inspires me to be a better person and mother to him. Life can be challenging at times but it only makes us stronger. He is a funny, animated, charismatic, enthusiastic little boy! I feel Ethan was sent to me for a reason, he changed my life for the better and he has touched all of our families and friends lives as well.
 
We just had our Buddy Walk in Pennsylvania on Sunday. The only way to describe this day is AMAZING! The group that came out to support my son and my family was almost 200 people! Words cannot even describe the feeling I have that so many people were gathered there for Ethan. To know, that almost 200 people were there for my son is a blessing. I could not be any happier with the outcome of the day. The support we have for Ethan from family and friends is overwhelming. I am so thankful to everyone that took time out of their day to spend it supporting Down syndrome.
 
The meaning of the word Buddy Walk to me means togetherness. Everyone there that day was there because of their special buddy whether it was Ethan or another person who has Down syndrome. I want to thank the Buddy Walk for having such a wonderful event where we can all go out and support our loved ones. All in all, I am very lucky to have been blessed with a child with Down syndrome and I would never change that for the world. He is destined to do great things and I will be right next to his side the whole way!

 

My Great Story

in the Media

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

 

In Montana, Apostrophe Magazine, a publication written by, for and about people with developmental disabilities, covered the Buddy Walk section of

the My Great Story campaign.

Click here to read the article, which is found on page 29 (and look for the My Great Story ad, The Traveler, on page 45).     

 

 

 

 

On Blog Talk Radio, Joy Keys interviewed NDSS VP of Marketing Julie Cevallos and NDSS Board Member Brian Skotko about My Great story and other Down Syndrome Awareness Month initiatives. 

Click here to listen to the interview.  

 

 

 

 

 

Parenting Magazine gave a shout-out to My Great Story on their Facebook page. 

Click here to view the post. 

 

 

 

 

 

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

 

@MSgal4Otto

@RJ_Morris

@joegerstandt

@SenGiron

@GlassDoctor1

@DinaDwyerOwens

@AndiSligh

@cappuccinoluvr

 

Thanks for all of your support and continuing to spread the word!

 

Social Media

To keep up with the latest NDSS news and create some buzz:

Click here to become a fan of the NDSS Facebook page.

Click here to become a fan of the Buddy WalkŪ Facebook page.

Click here to follow NDSS on Twitter.

Click here to follow the Buddy Walk on Twitter.