E-NEWSLETTER | OCTOBER 2012
Featured Story

Happy Down Syndrome Awareness Month!

October is Down Syndrome Awareness Month, and at NDSS we're so excited to celebrate! From Buddy Walks® across the country, to the 2012 Times Square Video, to the My Great Story campaign's new Down Syndrome Awareness Month section, to social media and advocacy, there are lots of dynamic ways to raise awareness this October. We invite you to read more and join the celebration! 
Resources
Scholar Spotlight
Since 2005, NDSS has provided financial assistance to young adults with Down syndrome who choose to take classes or enroll in postsecondary educational programs, through the O'Neill Tabani Enrichment Fund. Congratulations to this year's O'Neill Tabani Enrichment Fund recipients! Eleven outstanding students who have Down syndrome were awarded scholarships to help cover the cost of their postsecondary or enrichment courses, including Megan Cloyes of Princeton Junction, NJ. Read what Megan had to say about going to college!
Webinar Series
An Update on Down Syndrome Research
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, advocacy, family life and more.  
 
On Tuesday, October 16 at 2:00 PM ET, NDSS and the Down Syndrome Research and Treatment Foundation (DSRTF) will cohost a webinar entitled An Update on Down Syndrome Research with Dr. Roger Reeves.   

 


Ways to Give
Fundraiser Focus
Jake and Sam Cavicchi
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. 
 

Since 2009, the Cavicchi Family has been a part of Team NDSS - they joined the cause and began fundraising when their nephew and cousin, Owen Cavicchi, was two years old. In August, Owen turned six years old and he just started kindergarten in September. The whole family is very proud of him!  

Flagship Events
 
NDSS hosts several annual events in the New York Metro Area. Our events are growing and we are pleased to welcome people from across the country as our guests. Please consider joining us at one of our upcoming events. 

 


18th Annual New York City Flagship Buddy Walk®
Saturday, September 22, 2012

The Great Hill in Central Park

New York, NY

 

READ MORE »


Down Syndrome Awareness Night at the New York Red Bulls Presented by NDSS in Partnership with Toys"R"Us
Saturday, October 20, 2012

New York Red Bulls vs. Sporting Kansas City

Harrison, NJ

Private ceremony for NDSS guests inside arena at 4:00 PM
Interactive fun zone from 4:00 - 7:00 PM 
Match begins at 7:00 PM

Tickets are $25 each

All ages and abilities welcome

     

NDSS Gala & Auction

Thursday, January 31, 2013

6:30 - 10:30 PM

Cipriani 42nd Street

110 East 42nd Street

New York, NY

$500 per person; sponsorship packages available 

 

More information coming soon.


My Great Story
Down Syndrome Awareness Month Section
How are you celebrating Down Syndrome Awareness Month this October? We'd love to hear about it. Whether you're discussing it at home, at school, at work or elsewhere, share your plans with the new My Great Story Down Syndrome Awareness Month section! 
 
If you'll be at a Buddy Walk this season, we encourage you to check out the Buddy Walk section and share your story there! 
  
My Great Story of the Month Contest
Congratulations to Michael DelVecchio on winning the My Great Story of the Month Contest! Michael's story received the most votes in September and he will be receiving a Down Syndrome Footprint gift set. 
 
The author of the story with the most votes in October will win a $100 shopping spree at Blue Q. Share your story and spread the word throughout the month to win this prize! 
  
My Great Story: Stories of the Month
Each month, the two stories with the most votes in the My Great Story collection are featured in this section. The votes are reset at the end of each month.

 

Visit www.ndss.org/stories to check out the campaign and click the submit bookmark to share your story!


A Note to My Daughter on Her Second Birthday
By Michael DelVecchio, Yorktown Heights, NY
 

Dear Grace, 

 

It was two years ago today on a dark stormy night, Yankee Stadium lights gleaming in the background out the window of Columbia Presbyterian Hospital. You arrived in the early morning hours on July 24, 2010. Mom was able to hold you briefly before you were taken away. That was the only time we were able to hold you without the tubes and wires that consumed your life over the next 31 days. Dylan, your four-year-old brother, could not wait to get you home. 


There Are No Limits
By Leslie Castellanos, Los Angeles, CA
 
My daughter Iris Natalia Castellanos has Down syndrome. I was told while pregnant that she would most likely have Down syndrome but did not get a confirmation of diagnosis until after she was born. From the beginning doctors are always looking for a way to tell you what your child might not achieve. My daughter is three months old. So far she made it out of the ICU after seven weeks healthy, drinks from a bottle when they said she wouldn't, smiles, coos, turns over from tummy to back and vice versa, does full circles when placed on tummy, does baby pushups, reaches for toys, tracks toys with her eyes, shows interest when I read her books, and loves to take a bath. 
 

Buddy Walk®
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. Most Buddy Walks® take place in and around October in honor of Down Syndrome Awareness Month! Learn more and find one near you!
  
Buddy Walk News
Signing Time Giveaway
Rachel Coleman and the Signing Time! Foundation are pleased to offer each approved Buddy Walk one free Baby Signing Time (vol. 4) set.  Organizers can use it for a silent auction, raffle, incentive prize or add it to a lending library.  Please note: requests must be filled out by the primary organizer of the Buddy Walk and must be received by October 13.  Groups will be responsible for paying the shipping and handling charges. NDSS thanks Signing Time! for their continued support of the National Buddy Walk Program.

Imagination Movers October Contest
To celebrate Down Syndrome Awareness Month, National Buddy Walk Partner and Emmy-award winning Imagination Movers will be sponsoring a contest on the Buddy Walk Facebook page. Participants are encouraged to submit a picture they drew of the Imagination Movers, or a photo taken with them, to the Buddy Walk Facebook pageThe top picture and top photo with the most likes will each receive an Imagination Movers costume in time for Halloween. The next five entries with the most likes will receive a Back-to-School pack, which includes a Movers backpack, lunch pack and a copy of their Calling All Movers CD, which contains the song First Day of School. The contest will begin on October 1 and will run through October 15. 

Buddy Walk Pinterest Board
NDSS is excited about our newest Pinterest board, which features photos and anecdotes from recent Buddy Walks! Check it out and share your photos with buddywalk@ndss.org for a chance to be added. 
  
Advocacy
National Policy Center News
The Achieving a Better Life Experience (ABLE) Act Grows to Highest Support Ever in US Congress
Thanks to the entire Down syndrome advocacy community, the Achieving a Better Life Experience (ABLE) Act is well-positioned to be included in a larger tax package during the lame duck session, which takes place between the election and end of the year. The ABLE Act has earned the support of 36 Senate cosponsors and 227 House cosponsors. We are so pleased with these numbers, but we still need as much Congressional support as possible to pass the ABLE Act!

 
Help Shape the Next National Down Syndrome Research Plan
The National Institutes of Health (NIH) is leading the efforts to update the NIH Down Syndrome Research Plan, which is updated every five years and currently up for review. NDSS encourages affiliate organizations and advocates to provide feedback and input. 

 
Call for NDSS Buddy Walk® on Washington 2013 Champion of Change Advocacy Awards Nominations
In honor of Down Syndrome Awareness Month, NDSS is seeking nominations for its 2013 Champion of Change Advocacy Awards. Each year, as part of our annual NDSS Buddy Walk® on Washington, we honor those who work tirelessly throughout the year as advocates, leaders, and change makers in the area of advocacy for people with Down syndrome. Nominate your favorite advocate!   
 
NDSS Releases State Analysis of Universal Design for Learning (UDL) in the Elementary & Secondary Education (ESEA) Flexibility Request Waivers

 

Universal Design for Learning (UDL) remains a key NDSS strategy to ensure that all students with Down syndrome are able to participate and make progress in the general education curriculum. NDSS just released an analysis of 38 state ESEA Flexibility Requests on UDL, which waive requirements from the No Child Left Behind Act (NCLB) in exchange for promises of education reform. Click below to learn how your state addresses UDL in its ESEA Waiver and how you can promote UDL in your school, district and state.


 
About NDSS
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. Chris is an actor, singer, writer, and dedicated self-advocate. This month, Chris tells us the Straight Talk about Down Syndrome Awareness Month.
  
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. 
Toys"R"Us Toy Guide for Differently-Abled Kids®

NDSS is pleased to once again welcome Toys"R"Us as a corporate partner. The Toys"R"Us Toy Guide for Differently-Abled Kids® is an easy-to-use toy selection resource that can help parents and caregivers of children with special needs select toys that develop skills through the power of play.  All toys featured in the Guide are available at Toys"R"Us stores nationwide and online at Toysrus.com/DifferentlyAbled, which also offers "flippable" and downloadable digital versions in both English and Spanish.  This year, mom, TV host and NDSS My Great Story public service announcement star Nancy O'Dell appears on the cover alongside Saskia Vogt, a 4-year-old girl with Down syndrome.

 

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