National Down Syndrome Society E-Newsletter

       

March 2012 

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World Down Syndrome Day is March 21!

 

 

 

World Down Syndrome Day was established in 2006 by Down Syndrome International, with the goal of raising awareness and mobilizing support and recognition of the dignity, rights and well-being of people with Down syndrome across the world. March 21, the 21st day of the third month of the year, was chosen to symbolize the third copy of chromosome 21 present in Trisomy 21, the most common form of Down syndrome. This year, World Down Syndrome Day is especially significant as it is the first time that the day will be officially observed by the United Nations.
  
NDSS invites you to join us, along with the global community, by raising awareness in celebration of people with Down syndrome, their abilities and achievements. Show everyone you know how great people with Down syndrome are! Here are some ways that you can get involved:
  

My Great Story Public Awareness Campaign

 

The My Great Story public awareness campaign honors the 400,000 Americans with Down syndrome by sharing inspirational stories by and about them. We want to hear how you're celebrating! All are invited to share their World Down Syndrome Day stories in the new 3/21 section. 

 

In March, instead of the My Great Story of the Month Contest, all those who share a story in the 3/21: World Down Syndrome Day section will receive a prize!

  

Click here to visit the My Great Story campaign site and click the submit bookmark to share your story.

 

NDSS Signature 3:21 T-Shirts 

 

NDSS recently launched a line of signature t-shirts featuring 3:21on the front and the NDSS logo on the back. The t-shirts are for available men, women and children, and $5 will be donated to NDSS for each t-shirt purchased. 

 

The 3:21 t-shirts are great conversation and awareness pieces, especially for World Down Syndrome Day! Please place your orders by March 12 for U.S. delivery by March 21.

 

Click here to view the collection and make a purchase.

 

NDSS has received some great photos from those who have bought the 3:21 t-shirts. We've proudly featured four photos in this month's header, and a wider selection of photos we receive by March 12 will be set to music and uploaded to the NDSS YouTube Channel on World Down Syndrome Day! 

 

Please click here to email your NDSS 3:21 t-shirt photos to Jordana Stern, NDSS Communications Associate.  

 

3/21 Blogger Button

 

Thank you to all bloggers who decided to Do Something Extra in honor of those with an extra 21st chromosome by adding our new 3/21 blogger button. NDSS is so excited to work with the blogging community to raise awareness for World Down Syndrome Day and we look forward to future initiatives together.

 

Click here to grab this button for your blog and view a list of those who have already added it. Please email Jordana Stern once you've grabbed the button to be added to the list. 

 

Check out the Come Together for a Cause section below for inspiring local initiatives. Click here for more World Down Syndrome Day ideas - there are lots of ways to get involved!

  

NDSS National Policy Center Update

Buddy Walk® on Washington - Down Syndrome Community Storms Capitol Hill!

 

The annual NDSS Buddy Walk® on Washington brought together over 330 advocates from 39 states! NDSS is pleased with the participation, and we are very excited about this year's partnership with Down Syndrome Affiliates in Action (DSAIA), which brought together the DSAIA conference and Buddy Walk on Washington to maximize attendance by the Down syndrome community.

 

At the annual awards dinner on February 29, NDSS recognized its 2012 Champions of Change. Our 2012 honorees included: Bridget Brown of Illinois, Self-Advocate of the Year, Craig Blackburn of Louisiana, Self-Advocate of the Year, Jenn Sikora of Florida, Advocate of the Year, Dads Appreciating Down Syndrome (DADS) National, and the Down Syndrome Association of Greater Cincinnati. Special thanks to Congresswoman McMorris Rodgers (R-WA) and Chip Gerhardt, NDSS Board Chair, for serving as the Masters of Ceremonies for the dinner.

 

Both recipients of the Self-Advocate of the Year Award shared their stories with the My Great Story campaign.

Click here to read Bridget Brown's story.

Click here to read Craig Blackburn's story.

 

On March 1, Down syndrome advocates from across the country stormed Capitol Hill to meet with senators and representatives from their states. During these meetings, advocates discussed the NDSS 2012 legislative priorities which include:

  • Cosponsoring the Achieving a Better Life Experience (ABLE) Act (H.R. 3423/S.1872)
  • Supporting the doubling of Down syndrome NIH research funding this year
  • Cosponsoring the Trisomy 21 Research Resource Act of 2011 (H.R. 2696/S. 1841)
  • Voting against any Elementary and Secondary Education Act (ESEA) bill that does not address the education priorities in the NDSS ESEA position paper.
    • Click here to read the ESEA position paper.

If you weren't able to make the trip to D.C., we will be issuing an action alert for all advocates to send to their members of Congress advocating for our 2012 Buddy Walk on Washington priorities. 

Click here to sign up for our action alerts. 

Click here to email Sara Hart Weir, NDSS VP of Advocacy & Affiliate Relations or call 202-680-8867 with any questions or comments.

 

NDSS Responds to the National Institutes of Health's (NIH) 2011 Funding Announcement for Down Syndrome Research  

 

NDSS, along with the Global Down Syndrome Foundation and the National Down Syndrome Congress, issued a joint statement expressing disappointment in the federal funding decrease for people with Down syndrome in the 2011 National Institutes of Health (NIH) funding levels. 
Click here to read the joint statement.

 

ABLE Act Nears 100 Cosponsors in the House and Nine in the Senate!

 

On February 16, NDSS co-hosted a congressional briefing on the Achieving a Better Life Experience (ABLE) Act for members of Congress and staff.  Both Representative Ander Crenshaw (R-FL) and Representative Chris Van Hollen (D-MD) provided remarks on the importance of the bill and its passage. NDSS Board Member Steve Beck also spoke on the goals of the legislation. 

Click here to view a list of the cosponsors and to email your representative and two senators if they have not yet signed on.

 

Elementary & Secondary Education Becomes a Hot Issue in Congress

 

On February 9, Representative John Kline (R-MN), Chairman of the House Education and the Workforce Committee, introduced two bills, the Encouraging Innovation and Teacher Effectiveness Act (HR 3990) and the Student Success Act (HR 3989). These bills would reauthorize, or revise, the Elementary and Secondary Education Act (ESEA), formerly known as the No Child Left Behind Act (NCLB). The Encouraging Innovation and Teacher Effectiveness Act would negatively impact teacher preparation funding for institutions of higher education. The Student Success Act would revise federal requirements for holding schools, districts and states accountable for the academic performance of all students and closing the achievement gaps for subgroups, including the disability subgroup. This bill would significantly roll back accountability, especially for students with intellectual disabilities.

 

NDSS has developed a formal position paper on ESEA. Last week, NDSS attended a Congressional hearing on these bills to demonstrate opposition to any bill that does not address the provisions and principles in the NDSS position statement for ESEA reauthorization.

Click here to read the ESEA position paper.

 

NDSS Continues to Fight for Federal Transition & Postsecondary Funding

 

NDSS continues to successfully fight for federal funding for the Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID). Despite budget concerns in Congress and consolidation pressures by the Obama Administration, Congress appropriated $10.9 million to maintain the funding level for TPSIDs for this year.

 

Last week, the Obama Administration released its fiscal year (FY) 2013 proposed budget to try and consolidate TPSID funding once again.  While the Obama budget includes continued funding for current grants, there is no guarantee that funding for the 27 TPSID projects and the Think College coordinating center will not be shifted into other programs at a later date under the consolidation plan. NDSS continues to lead the charge to fight to retain federal funding for this important program.  

Click here for more information about the TPSIDs and the NDSS postsecondary education for students with intellectual disabilities work. 

 

Sign up to Receive Important Policy Action Alerts

Be an Advocate!

 

Whether or not you were able to join NDSS in Washington, D.C. at the Buddy Walk® on Washington, 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 year-round. 

 

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 health, education, research, family life and more. In past months, families, self-advocates, affiliates and others have enjoyed presentations on oral health, with Dr. Jessica DeBord, vision with Dr. William Motley and an innovative, inclusive camp program with Jenni Newbury. 

 
Click here for more information on past NDSS webinars.
 
In March, the NDSS webinar will be "Financial Planning for Your Loved One with Down Syndrome." The presentation will be on March 15 at 1:00 PM ET and include guest speakers Joan Cleveland and Brett Berg of Prudential Life Insurance.  
 
Click here to register for our upcoming webinar hosted by Prudential, focused on the broad range of issues that affect families that have dependents with special needs.  

 

 Buddy Walk® News

To learn more about the National Buddy Walk® Program, visit www.buddywalk.org

 

NDSS is Pleased to Announce that Registration is Open for the 2012 Buddy Walk Conference!  

 

The 4th annual Buddy Walk Conference will take place on Saturday, April 28, 8:00AM - 4:30PM at the beautiful Seaport Hotel in Boston, MA.

You won't want to miss this opportunity to share ideas and best practices with Buddy Walk organizers from across the country at this exclusive one-day meeting.

Below is a description of one of our sessions, which will be led by Maureen Gallagher and Angie Ortiz of the Massachusetts Down Syndrome Congress (MDSC). 

 

Title:  Best Practices in Engaging the Community in your Buddy Walk Program 

 

Engaging the entire community in your Walk will help you create the awareness you are looking for and bring your Walk to the next level.   

 

Learn how the MDSC engages self-advocates, legislators, schools, local businesses and others all year long to create a Buddy Walk program, not just a one day event. You'll hear about best practices that work including the MDSC "All Stars" program, Buddy Bucks campaigns, school-wide campaigns, legislative advocacy efforts, and self-advocate leadership initiatives.  


Click here for more information on the conference.

Click here to register for the conference. 

 

If you have any questions, please click here to email Becky Switalski, NDSS National Buddy Walk Director, or call 877-526-0270. 

 

We look forward to seeing you at the Buddy Walk Conference!

 

This conference is presented by NDSS and co-sponsored by the Massachusetts Down Syndrome Congress.

 

2012 Buddy Walk Season

 

Registration is 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.   

 

Please note: The Buddy Walk website is currently undergoing maintenance and therefore, the online registration option has been deactivated.  Click here to request a registration form. Thank you in advance for your cooperation. 

 

World Down Syndrome Day - and Thank You

 

Each year, the Buddy Walk program expands into new countries across the globe.  As World Down Syndrome Day approaches, NDSS would like to recognize the countries that are joining the program for the first time in 2012: Albania and Trinidad & Tobago.  We anticipate additional new Walks to be taking places overseas as well as returning Walks in New Zealand, the U.K., Gibraltar, Japan and Canada.

 

In honor of World Down Syndrome Day, NDSS would like to thank all Buddy Walk organizations for your participation in the National Buddy Walk Program. We have created some badges to commemorate your involvement in the program and for hitting various milestones.  You can see some examples below:                 

  

 

Please click here to answer a quick one question survey to make sure our information is correct!

 

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 and click the 'submit' bookmark to add your story!

 

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.


Stay Connected!

  

Follow the Buddy Walk on Facebook 

Follow the Buddy Walk on Twitter 

Follow the Buddy Walk blog

 

NDSS Annual Gala & Auction

The NDSS Annual Gala & Auction took place on February 9 at Gotham Hall in New York City.  To date, this event has raised nearly $250,000! 

 

Since 1986, NDSS has gathered its friends and supporters for the annual Gala to celebrate the NDSS mission, the accomplishments of individuals with Down syndrome and those who contribute to the Down syndrome community. This year, NDSS honored Knology as a Distinguished Corporate Partner for the company's role in the National Buddy Walk® program. Knology is a West Point, GA based cable, digital phone and high-speed internet services provider for markets across the Southeast and Midwestern U.S. NDSS Board Chairperson, Chip Gerhardt, presented the award to Knology.

 

NDSS also honored WCBS co-Anchor Chris Wragge as a Remarkable Individual for his five year commitment as NDSS Media Ambassador. Chris has been a spokesman, a fundraiser and a friend to NDSS and his genuine love and commitment to the Down syndrome community is boundless. His award was presented by his friends, Self-Advocates Chris Burke, Brad Hennefer and Sara Wolff.

   

WCBS Weathercaster Lonnie Quinn was an enthusiastic Master of Ceremonies and NDSS Board Member Terry Clancy once again created lasting memories as Auctioneer.  A star of the evening was Self-Advocate Erin McNulty who spoke about receiving an O'Neill Tabani Enrichment Fund Scholarship from NDSS to attend Temple University in Philadelphia, PA. Thanks to her incredible remarks, $30,000 was raised at the event for this Fund.

 

Thank you to all of our supporters who joined us for a festive evening.  Your presence was truly appreciated and valued.

 

Click here to view select photos from the 2012 Gala & Auction.

 

NDSS Spring Luncheon: Save the Date

Join NDSS at our annual Spring Luncheon on Wednesday, June 6 from 11:30 AM - 2:30 PM at 583 Park Avenue in New York City. We are pleased to announce that this year we will be honoring Emmy Award winning actress, comedian and author Jane Lynch. The Luncheon will also feature the Melissa Riggio Voices Award, presented to an extraordinary young woman with Down syndrome.

 

For more information, click here to email Pam Sandonato, NDSS VP of Development, or call 212-763-4365.

 

Straight Talk with Chris Burke

 

NDSS is thrilled to welcome our newest e-newsletter columnist, NDSS Goodwill Ambassador Chris Burke.  Chris 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 at 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.  In this monthly column, Chris aims to inspire individuals with and without Down syndrome to advocate for themselves and others. 

 

World Down Syndrome Day

 

My name is Chris Burke. I am the Goodwill Ambassador for the National Down Syndrome Society.  In Straight Talk with Chris Burke I will write about different topics and issues about self-advocates with Down syndrome.  I will write about these topics: self-advocacy, public speaking, sibling and parents' viewpoints, real world job tips and many more to come. 

 

March 21 is World Down Syndrome Day.  This is a very important day for self-advocates, since this is the day we can celebrate our abilities, not our disabilities.  This is a day for us to be proud to have been born with Down syndrome.  We are very capable and need to speak out for ourselves - to talk about the importance of families, education, inclusion and so much more.  We have the right!  Hear us out.  World Down Syndrome Day is a great opportunity to speak up!  

 

This year, the United Nations is recognizing World Down Syndrome Day for the first time. This is all about one word - inclusion.  We have the right to be included around the world.  I am honored to be attending this event at the United Nations on 3/21.  That night, I am going to celebrate with the NDSS Young Leadership Committee at a bowling party at Lucky Strike Lanes in New York City.  It's wonderful to have fun and to be together to support and encourage everybody with Down syndrome on World Down Syndrome Day. 

 

Click here to learn more about the United Nations event and here to register to attend.

Click here to learn more about the Young Leadership event at Lucky Strike Lanes. 

 

Click here to find ideas for things to do to celebrate World Down Syndrome Day wherever you are!     

 

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.  


Mamie's Mile

Mamie Grace Eynon was born with Down syndrome and was 2˝ months old when she passed away. In Mamie's memory, her parents Elizabeth Manresa and Teddy Eynon, set up a foundation called Mamie's Mile that hosts two special events in the Washington, D.C. area each year; a Bloomingdale's shopping event and a one mile walk through their neighborhood to raise awareness.

 

In 2011, both events raised $10,000, which was donated to Washington Children's Cardiac Intensive Care Unit, where Mamie was treated.  The funds raised in 2012 will be donated to support the NDSS National Policy Center.  The Bloomingdale's event will take place on March 14 and 10% of proceeds will be donated to NDSS.  Mamie's Mile will take place on May 19.  Information about both events is available at www.mamiesmile.org

 

NDSS asked Elizabeth to share Mamie's story with us and to tell us what has motivated her and Teddy to remain advocates for the community.  Here is an excerpt of her story.

 

"I was about 12 weeks pregnant with twins when I discovered that one of my babies would be born with Down syndrome. In the beginning, we didn't think we would be capable of raising a child with Down syndrome. Boy, were we wrong! After a lot of tears and a great deal of thought... we knew this little girl would have a huge impact on our sons' lives and make our family a better one. 

 

Unfortunately, our society is programmed to believe that people with Down syndrome don't have the same value as others. The pain and strife we experienced during that time could have been avoided or at least minimized. If we had known more about Down syndrome, or if our society was more accepting, our reaction may have been one of joy instead of sadness. Having a child with Down syndrome isn't a curse; it is, as many parents will tell you, a blessing.  

 

Our blessing didn't last. Sweet Mamie Grace died after suffering complications from heart surgery. Our pain is ever-present and my guilt as a mother for not embracing her from the very beginning continues to this day. It is my hope for parents who first learn they might have a child with Down syndrome, to be able rejoice and not regret. That is why we have chosen to raise money for NDSS. They work everyday to not only improve the lives of people with Down syndrome but also educate those who don't yet see how amazing these people can be."

 

Click here to RSVP for the Mamie's Mile Bloomingdale's shopping event.

Click here to watch a video the event hosts put together to promote Mamie's Mile.
Click here to view the Mamie's Mile fundraising page

 

Click here to contact Pamela Sandonato, NDSS VP of Development, to learn more about NDSS Celebrations.

 

ComeTogether
Come Together for a Cause

In honor of World Down Syndrome Day on March 21, NDSS invites you to host a gathering, send an email or letter to your personal contacts about the importance of the day, post something on Facebook, Twitter or your blog, or find another way to celebrate people with Down syndrome.  Don't let the day pass by without at least ONE mention of Down syndrome!

 

Since January, we have heard from many of you about your plans to raise awareness about Down syndrome on March 21. Here are some of your great ideas!

  • A soccer team in Pennsylvania plans to replace their standard white shoe laces with yellow and blue laces.
  • A mother in Ohio purchased several books about acceptance and inclusion of children with disabilities to donate to the library in her child's school.
  • A student who has Down syndrome will give out blue and yellow bookmarks to her West Virginia class. Her father and vice principal have collaborated to make World Down Syndrome Day into a week-long celebration. Adult self-advocates will read to the students and discuss their experiences with the Special Olympics. 
  • A group of graduate students in an New York occupational therapy program are hosting a happy hour.
  • Parents of a preschool student in Connecticut are decorating cupcakes (with blue and yellow M&Ms) with students in their daughter's classroom.
  • A group of high school students in California put together a program about inclusion that they will present in a local elementary school.

Still looking for inspiration? Click here to check out our World Down Syndrome Day initiatives and ideas.

 

For those in Chicagoland or the New York City metro area, please join us at one of these Young Leadership events:

 

5th Annual Dream BIG Benefit

6:00 - 9:00 PM CT
Theory

9 West Hubbard Street

Chicago, IL
Hors d'oeuvres, cocktails, dessert, raffles and prizes

www.dreambigchicago.org

 

 

NDSS Young Leadership Committee Celebrates World Down Syndrome Day

7:00 - 10:00 PM ET

Lucky Strike

42nd Street & 12th Avenue

New York, NY

Bowling, hors d'oeuvres, cocktails, raffles and prizes

http://NDSS.kintera.org/NYCMarch21 

 

Join the Virtual Party!

NDSS is hosting a Twitter party on World Down Syndrome Day with live tweeting from the events above and others across the country. Whether you're attending an event or hanging at home, join our virtual celebration by using #321 in your tweets!

 

Make a Recurring Gift to NDSS

NDSS is delighted to receive support from so many individuals across the country.  Many of you elect to donate multiples time in one year, and those donations do not go unnoticed!

 

In case you are unaware, NDSS offers a recurring gift option for online donors. Click here to visit our general donation page, powered by Blackbaud.   The second bubble (see image) invites you to enter a recurring gift amount and the number and frequency of payments.  It will calculate your total gift, but your first payment will only include the initial gift amount.

 

This approach to donating to NDSS allows you to contribute your desired amount over a course of time rather than in one lump disbursement.   Consider it a layaway program for your favorite cause!

 

Thank you again for all of your support.

 

 

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 Samuel Zdancewicz of Springville, PA.  He is currently a full-time student at Shephard's College in Union Grove, WI, where he studies Culinary Arts  so he can learn how to cook and eventually get a job in the field.  Sam participates in Special Olympics, competing in bowling and track.  Sam is also an active member of Bridgewater Baptist Church where he plays guitar with the band during worship services and has given a presentation on what he learned during his first year away at college.  When asked, "Why do you wish to pursue postsecondary education?" Sam had this to say:

 

"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 terrific role model for other students with Down syndrome who wish to pursue their dreams to enrich their lives through postsecondary education. 

 

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

 

GiGi's Playhouse

 

 

Exciting News from GiGi's Playhouse 

 

GiGi's Playhouse started in 2003 as a local Playhouse in a suburb of Chicago and has become an international phenomenon, spreading awareness and inspiration to everyone it touches. GiGi's Playhouses are Down syndrome awareness and educational centers that provide resources, specialized teaching, and support to individuals with Down syndrome, their families and the community.  A particularly strong focus at each Playhouse is teaching literacy and math.

 

GiGi's Playhouse Centers have evolved into educational centers with a focus on national awareness for Down syndrome. All programs are free to families and are educational, therapeutic or social in nature. Each program is designed to work on specific skill development in several areas including speech and language, social development, and fine and gross motor skills.

 

In just nine years, 10 Playhouses have opened.  There are GiGi's Playhouses opening on the West Coast, East Coast and more in the Midwest. 

 

The newest member of the GiGi's family is GiGi's Playhouse New York City. The NYC Playhouse will open with several programs and tailor its offerings to the specific needs of its community, while reaching out to educate and energize the community about what is possible for children with Down syndrome.  

 

Click here to find out how you can visit and get involved or start a playhouse in your community.

 

My Great Story of the Month Contest 

 

 

Thank you all for your patience and understanding as we dealt with technical difficulties on our site this month. Due to some of these issues, NDSS is postponing the My Great Story of the Month contest. We apologize for any inconvenience and appreciate your bearing with us.

 

Instead of the March contest, NDSS is excited to announce that we will be highlighting the 3/21: World Down Syndrome Day section of My Great Story! All participants who submit a story to the 3/21 section will receive a prize, so tell us all how you're celebrating!


Click here to share your story. 

 

My Great Story: Stories of the Month

 

This month we are featuring two stories from the 3/21: World Down Syndrome Day section of the My Great Story campaign.

 

To share your own story visit www.ndss.org/stories and select the 

3/21: World Down Syndrome Day section.

World Down Syndrome Day 2011

Tricia Dutterer
Hanover, Pennsylvania

 

When my daughter, Kamdyn, was born on April 27, 2010, the diagnosis of Down syndrome shook me to my core. I felt that every dream that I had for her life and mine were snatched away. At that time, I had never even heard of World Down Syndrome Day, and even if I did, I certainly would not have seen it as a day to celebrate. I loved Kamdyn, but I hated Down syndrome. I felt like it had taken away a part of my daugther.  


As the weeks went on, I began to see that Kamdyn was not just a baby with Down syndrome. She was my baby. She was an amazing being that I had the privilege to know and love and nurture. I began to see that Down syndrome was just a part of her. I still wished I could take that part away, but I knew it was impossible. 


Then, months passed. Kamdyn smiled and belly-laughed. She rolled over and sat up. And I knew that she was everything that she was always meant to be from the moment she was conceived, and I loved her, all of her, and Down syndrome is a part of her. To take any part of her away, would be to change who she is. She is beautiful. She is joy. So when March 21, 2011 came, I was ready to celebrate. We took a family trip to Hershey's Chocolate World, and then we ate at the Shady Maple in Lancaster, which is about the best buffet around. I look forward to another great celebration this year, as well. 

 

What I Will be Doing on WDSD
Chally Aalbers
Fort Worth, Texas


My beautiful son, Jack, who happens to have an extra chromosome is scheduled to make his entrance into the world on March 20, 2012. On World Down Syndrome Day I will be holding and loving my baby boy and beginning our journey together. Hopefully this annual event will help promote acceptance and inclusion of those with Down syndrome and allow my child to be known as Jack, not Jack with Down syndrome.

 

 

NDSS thanks those of who have shared your stories in the 3/21: World Down Syndrome Day section of the My Great Story campaign! We look forward to seeing 

more great stories there soon!