National Down Syndrome Society E-Newsletter

       

January 2012

 

          

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Over the River and Through the Woods: 

Where Have Your Worn Your 3:21 T-Shirts?

                

NDSS is thrilled with the initial response to the recently launched 3:21 signature t-shirts. Men, women and children all over the country are wearing their 3:21 t-shirts and raising awareness for Down syndrome wherever they go. 


Last month, NDSS featured some 3:21 t-shirt models as they struck a pose in the new styles. Now we invite everyone who purchased a t-shirt to show it off! The holidays are not only a time for gift giving, but for family togetherness - wherever your family might be, we'd love to see all of the great places you've worn your 3:21 t-shirts. Whether your family is having a white winter, a tropical season or somewhere in between, show us how you sport your 3:21 t-shirt! 

 
Send us your photo for a chance to see it used in our World Down Syndrome Day materials on March 21!
 
Click here to email your 3:21 t-shirt photo to Jordana Stern, NDSS Communications Associate.
 

 

NDSS National Policy Center Update

Buddy Walk® on Washington
 
The Buddy Walk® on Washington is just around the corner - February 29 to March 1 in Washington, D.C.  The annual two-day advocacy event brings the Down syndrome community together to advocate for public policies that impact the lives of people with Down syndrome and their families. Attendees have the opportunity to meet with members of Congress and their staff to advance legislative priorities, such as the Achieving a Better Life Experience (ABLE) Act. 

 

This year, NDSS and Down Syndrome Affiliates in Action (DSAIA) are holding the Buddy Walk on Washington and the DSAIA conference concurrently, 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.  

 

The fee for registration, which includes a ticket to the dinner reception on February 29, is $25. The deadline for registration is January 27. Click here to register. 

 

Preparing for the Buddy Walk on Washington: Advocacy Training Session & Webinars
 
The NDSS National Policy Center hosts several training opportunities to ensure our advocates are well prepared for their meetings on Capitol Hill. As part of the Buddy Walk on Washington, on February 29, from 3 - 6 PM ET, NDSS will host its advocacy training session for all participants. The advocacy training session is an opportunity to learn the priorities for the 2012 Buddy Walk on Washington from the NDSS Policy Center staff. Attendees will have the opportunity to hear presentations on the key "asks," participate in role-play sessions with state delegations and network with affiliates and advocates across the country. 

Prior to the Buddy Walk on Washington, NDSS will host two webinars to prepare participants for the event. We request that all attendees partake in at least one webinar (Note: webinars will also be recorded and posted to the NDSS website.) The dates for the webinars are January 24 at 1 PM ET and February 2 at 1 PM ET. R
egistration information for the webinars will be posted on the NDSS website soon.  

Registering for the Buddy Walk on Washington as soon as possible allows NDSS to communicate important information about the event (i.e., how to set up meetings with your members of Congress, communicate with others attending from your state, etc.), so please take a few moments and register now. 

We hope to see you there!

Click here to email Sara Weir, NDSS Senior Policy Advisor, for more information.

 

 

Sign up to Receive Important Policy Action Alerts

Be an Advocate!

 

Whether or not you will be attending the Buddy Walk® on Washington, you can help make a difference in the lives of people with Down syndrome through advocacy year-round! If 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 Spanish Brochure and Redesigned New Parent Packet

 

NDSS is excited to unveil "La Sociedad Nacional de Síndrome de Down," a Spanish language version of our 10-page brochure overview of Down syndrome and NDSS.  In addition to creating the Spanish version of the brochure, we have updated and reprinted the English version of the brochure and redesigned and updated our 46-page new and expectant parent guide, "A Promising Future Together," and its Spanish counterpart, "Un Futuro Prometedor Juntos."  

 

Click here to download an electronic version, request a hard copy or place a bulk order of each publication  

 

 

Buddy Walk® News

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

 

Buddy Walk Organizers Survey

 

Congratulations and thank you to the following Walk organizers for being the first ten to complete the 2011 Buddy Walk Organizers Survey. They will each receive a $20 gift certificate from Buddy Walk National Partner, Down Syndrome Footprint, in addition to being entered into a drawing for a free registration to the Buddy Walk Conference in Boston, MA this spring.  

  • Stacy Quaid, Manasota BUDS (FL) 
  • Bobbie Dawson, Allen County Down Syndrome Awareness Group (OH)
  • Joseph Ferrantella, Down Syndrome Association of Northwest Indiana (IN)
  • Cynthia Jones, Down Syndrome Association of Atlanta (GA)
  • James McFadden, Southern Utah Down Syndrome Association (UT)
  • Carla Macks, Acton Up With Downs (FL)
  • Joyce Cordell, El Paso Community College Diversity Program (TX)
  • Angela Ortiz, Massachusetts Down Syndrome Congress (MA)
  • Melissa Fitch, Down Syndrome Association of Santa Barbara County (CA)
  • Janet Bailey, Opheim Buddy Walk (MT)  

It's not too late to be entered into the conference registration drawing! Click here to fill out the survey and be eligible to win one free registration. 

 

2012 Buddy Walk Conference    

 

The 4th Annual Buddy Walk Conference will be held on Saturday, April 28,  in Boston, MA. We are putting the final touches on the schedule of events and encourage you submit topics to include in breakout sessions and roundtable discussions. 

 

Click here to email your suggestions to Rebecca Switalski, NDSS National Buddy Walk Director. Interested in being a speaker? Let us know that too!

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.   

 

Click here to log-in and register your Buddy Walk.  

Don't remember your password? Click here to have it emailed to you.

 

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!


Thank You!


The Buddy Walk staff at NDSS is working on a little something to celebrate your participation in the National Buddy Walk program.  Please click here to answer a quick one question survey to make sure our information is correct!

 

 

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.  


 DestiNation Imagination 

 

In November 2010, NDSS was contacted by a group of four 8th grade students (now 9th graders) from The Woodlands, TX. Madison Chollett, Ben Gooch, Ian Kennedy and Cole Saleh participate in a program called DestiNation Imagination, in which students use out of the box thinking and problem solving skills to create a presentation that is then judged on a given criteria. 
 
For their 2011 presentation, they chose the Community Outreach Project, the goal of which is to identify a need in your community and make a change accordingly. Each member of the team has a personal connection to someone with Down syndrome, so they chose to raise awareness for people with Down syndrome. As a part of the project, they also decided to raise funds for NDSS. 
 
The group designed custom charm bracelets featuring the Buddy Walk® logo. They sold the bracelets throughout the year to classmates and friends, online and at special events, and in December they donated $800 to NDSS. Many of you purchased bracelets directly from them earlier this year when they were featured in our e-newsletter.
 
In addition to the funds they donated to NDSS, the group also donated extra bracelets that NDSS can sell. The group covered all of the upfront costs, so 100% of every bracelet purchased goes to NDSS. 
 
Bracelets are sold separately (thin or thick band as seen above) for $10 each. They are available as long as supplies last. 
 
Thanks to Madison, Ben, Ian and Cole for their innovation, leadership, contribution, and really cool legacy - suppporters of people with Down syndrome will continue to wear these bracelets for a long time! 
 
Click here to download an order form and make a purchase.
 
Click here to contact Pam Sandonato, NDSS VP of Development, about your own fundraising idea.

 

Do You Blog?

Last month, NDSS announced its search for bloggers who share their stories, wisdom and journeys about Down syndrome.  We received many wonderful responses from parents, siblings and friends of people with Down syndrome who blog about their loved ones - thank you to those who shared your blogs with us! We want to make sure we continue to grow our database of bloggers so we can work together on future outreach initiatives.

 

If you'd like to stay closely connected to NDSS in cyberspace, and have not yet sent us your blog information, please click here to send an email with your name, blog title and URL to Jordana Stern, NDSS Communications Associate.
 

How David Met Sarah 

  

Anne Kelleher's newest novel, How David Met Sarah (eFitzgerald Publishing, 2011), might appear to be an ordinary story about a young man who works in a mail room, lives at home with his parents and falls in love. But unlike any of her previously published work, How David Met Sarah was inspired by and written for Anne's youngest brother, a 36 year old man with Down syndrome.

 

An internationally published author of eleven sci-fi/fantasy and romance novels, Anne decided to write How David Met Sarah because as much as her brother has always enjoyed a good story, it's difficult to find books that hold his interest. Most stories written at his reading level are for children. 

"My mother put the idea in my head when my first novel was publishedback in 1995," says Anne. "I wanted to write the story for two reasons. The popular perception of people with a disability like my brother's is that they're like children. But my experience of my brother is that he wants the same things any adult would want - satisfying work and a special someone to love. So I wanted to give my brother not just a story he could read and enjoy, but also one that had a hero with which he could identify."  
 
How David Met Sarah is both content and reading level appropriate for adults with lower level reading skills, although everyone who reads it enjoys the storyline. Like the main character, the "real" David lives with his parents, works in a mail room, and is searching for the girl of his dreams. He loved the story so much that Anne plans to write a five book series, continuing the main character's story. She is currently finishing the second book, titled When David was Surprised.  
 
20% of the profit from sales of How David Met Sarah will be donated to NDSS. 
 
Click here to buy the book from Barnes & Noble for Nook or in print. Or, ask for it at your local Barnes & Noble book store. 
Click here to buy the book from Amazon for Kindle or in print.
Click here to check out the book's blog.
Click here to contact and follow the author. Anne and David are available for book signings and/or workshops and lectures.
 

Monica & David on DVD

 

Monica & David is now available on DVD! The Emmy-nominated documentary follows the love story of two adults with Down syndrome and the family who strives to support their needs. The DVD includes the complete film, deleted scenes and a bonus video about employment in the Down syndrome community. The DVD is fully accessible and bilingual, with English and Spanish audio description and subtitles for those who are deaf or hearing impaired.

Click here to buy the DVD. When you use this unique link, 10% of your purchase will be donated to NDSS!

 

Come Together for a Cause

NDSS is seeking leaders from across the country to join us in an effort to plan multiple events in multiple cities on Wednesday, March 21, official World Down Syndrome Day! Here is one great example of an upcoming event:


In Chicago, IL, the 5th Annual Dream BIG Benefit has been scheduled for March 21. This special event will include food, drinks and inspiration, and all funds raised will support the O'Neill Tabani Enrichment Fund, a postsecondary education scholarship fund for young adults with Down syndrome.

WHEN:
March 21 from 6:00 - 9:00 PM CT
WHERE:
Theory

9 West Hubbard Street, Chicago, IL
COST:
$50 in advance or $60 at the door 

Special pre-purchase deal - buy two tickets for $90
DETAILS: 

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

 

Click here to contact Dream BIG Chicago for more information and to order tickets.

 

Consider starting an event in your area that can expand our presence in your community and raise money and awareness in honor of World Down Syndrome Day.  Click here to contact Pam Sandonato, NDSS VP of Development, 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 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 Mary Warm of Kansas City, MO. Mary is dual-enrolled at Penn Valley Community College and Archbishop O'Hara High School, both in Kansas City. She is a senior at O'Hara, where she is a member of the National Honor Society. At Penn Valley she is taking the classes she needs in reading and writing so that she can start to take classes in early childhood education. She volunteers about 200 hours a year for the Head Start preschool at the local YMCA and has helped teach the Sunday School 4th and 5th grade students. Next year she hopes to continue her education at either at Penn Valley or in a new inclusive program at the University of Central Missouri.

On her scholarship application Mary wrote, "There is something that you don't know about me. I have a dream to go to Hollywood. I really want to see famous people I like. I also have a wish. I wish I could be an assistant teacher with kids. I also have a hope in the world. I hope kids who are poor have an education." Mary has been working at a Head Start program, so she has been gaining experience but needs education past high school. With this scholarship, Mary says, "Now, I can start to get the training I need to be a preschool assistant teacher."

NDSS congratulates Mary on her hard work this semester. She 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. 

 

 

National Task Group on Intellectual Disabilities and Dementia Practices

NDSS is one of several organizations collaborating with the National Task Group (NTG) on Intellectual Disabilities and Dementia Practices as they work to develop a national strategy to address the growing needs of individuals with intellectual disabilities affected by dementia. The most recent meeting was held in Washington, D.C. on November 8. Madeleine Will, NDSS VP of Public Policy, was in attendance as the NTG reviewed its latest efforts and solicited further input from collaborating organizations.

The National Task Group (NTG) is currently completing an extensive report on individuals with intellectual disabilities affected by dementia, their families, care givers and communities. This report will be presented to the National Alzheimer Project Act (NAPA) Advisory Council on Alzheimer's Research, Care and Service at their January 17-18 meeting in Washington, D.C.

It is the hope of the National Task Group (NTG) that these efforts will contribute significantly to the national conversation on how to include the concerns and needs of people with intellectual disabilities affected by dementia and their families in any future national plan.

Click here to visit the website of the American Association of Developmental Medicine and Dentistry (AADMD) for more information about the NTG and its activities to date. The final document "My Thinker's Not Working: A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports" will be posted on the AADMD site in the next few weeks.


The Department of Health and Human Services (HHS) continues to seek input on the National Plan for Alzheimer's Disease and Related Dementias (ADRD). All are encouraged to consider voicing concerns about the need to include individuals with Down syndrome and other intellectual or developmental disabilities in future care and service plans. Click here to send your comments. 

Click here to visit the NAPA website and learn more. If you would like to be alerted when new information is available about NAPA, a Listserv is also available that will automatically email you a monthly message. Click  here to email and join. Whatever email address the message is sent from will be what is used in the Listserv. Please include "subscribe NAPA-L" and your name in the body of the message.


My Great Story of the Month Contest 

 

 

 

Congratulations to Nikki Papoulides, of Canton, OH, on winning the My Great Story of the Month Contest! Nikki's story received the most votes in December, so she will be receiving a gift box of BISCOTTEA & BIS*COFFEE Gourmet Shortbread!

In January, 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.

Inclusion Works
Nikki Papoulides
Canton, Ohio  

 

This is Tasho, an amazing seven year old boy, who happens to have Down syndrome. We have come along way from the shock of a prenatal diagnosis, three days later I found myself using the word included for the first time. I told the doctors, that there was no need to give me my options, this child will be included. Those words hold true today. Tasho is the first child in our school district to be fully included in general education classrooms at the elementary level. Tasho has been included since he started kindergarten, he is now in the second grade. Being the first is always ground breaking, not just for us, but for our entire community. It really is a situation where everyone is a winner. His peers learn that it's ok to be a little different and to learn differently, his teachers learn that children who happen to have Down syndrome can learn right next to their typical peers and Tasho learns to be a fully functioning member of his society.
 
Our IEP team works hard in making certain that inclusion works. The kids at school know who he is, and are accepting of him. During the past few years, Tasho has received academic achievement awards, and good character awards as well. It is a road less traveled but it is a road worth taking. Tasho is an inspiration to everyone, and we all stand in awe at his accomplishments and achievements. It's not always perfect, and mistakes are made at times, but that's ok, because he is paving a path for other children as well, breaking down the stigma and stereotypes that often plague our children. It is an honor to be Tasho's mom and advocate. But in the end, he is the one that has to do the work, and for this I couldn't be prouder of him. Inclusion works!

 

Keegan
Cindy Rhinevault
Toledo, Ohio  

 

This is our precious son Keegan - who can light up a room with his beautiful smile and sunny disposition. He loves to give sloppy wet kisses and finds it funny to wipe them off. Since his birth in 2008 Keegan has had some health issues which included open heart surgery and recently he was diagnosed with unilateral hearing loss. However, this doesn't cause his daddy and me to put limitations on Keegan. Instead, we have decided to encourage him to reach his fullest potential through love and patience. Keegan has taught his entire family that love is not what you look like or your abilities, it's about who you are on the inside that counts.
 

 

My Great Story Holiday Section 

 

Congratulations to Richard Alesky, whose story received the most votes in the My Great Story Holiday Section! 

 

A Thanksgiving to Remember
Richard Alesky, Downers Grove, Illinois 

My late brother, Ronald Alesky, died at the age of 23, in a tragic house fire in 1987, three weeks before my wedding. Ronnie, as he was known to my family and friends, was the usual God's gift to everyone who came in contact with him. Ronnie had a knack for creating laughter that came from deep inside you.

During one Thanksgiving dinner at my parents house, my brothers, my cousins, and I were all sitting at our own table enjoying a delicious traditional dinner, when my brother Ronnie broke into one of comedic acts. As we were all stuffing our faces and sipping on our drinks, Ronnie continued with one of his best routines to date. Food was falling out of our mouths and drinks were being spit across the table and out of noses as we laughed uncontrollably. It was the most horrific and disgusting moment ever in the Alesky household, and it just fueled the fire for Ronne to continue his comedic rampage. After 15 minutes or so of hysterical laughter, the fun finally ended when my older bother Ray leaned back in his chair to catch his breath, and then fell forward with all his force right on to my cousin's big toe. The scream could be heard for miles. After the dust cleared, we had one broken toe, a table full of regurgitate food, and thousands of tears of laughter. Although concerned, Ronnie just sat there with his usual smug smirk, "made you laugh," look on his face.

When our families get together we still talk about that day and it still makes us laugh. We all loved Ronnie for his humor, bologna sandwiches, Beatles music playing throughout the house, and most importantly, his unconditional love.  

My Great Story

in the Media

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

 

In Albuquerque, NM, My Great Story author Rebecca Johns' submission was

was featured on the New Mexico Kids family magazine Facebook page.  

Click  here to read the post.     

 

 

 

 

 

In Knoxville, TN, the local NBC affiliate aired segment about Donna Crigger and her daughter Samantha, and their My Great Story campaign submission. 

Click   here to view the segment. 

 

 

 

In Toledo, OH, Toledo Free Press interviewed Cindy Rhinevault about her My Great Story submission about her son, Keegan Simms.

Click here to read the article.

 

 

In Toledo, OH, Fox Toledo aired a segment featuring Keegan Simms, his parents, and the submission about him in the My Great Story campaign.

Click here to watch the segment.

 

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:

 

@ROLDallas

@jonnypunani

@CirclesLady

PWD OFF ROAD 

Dee Dee Neuhausel

 

If you've shared the My Great Story campaign through a social media outlet, please click here to let us know! 

 

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 Walk® Facebook page.

Click here to follow NDSS on Twitter.

Click here to follow the Buddy Walk on Twitter.