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Archive for November, 2011

Pre-natal Testing…

Tuesday, November 29th, 2011

An author asks, “What is the value of a life? What can a person with a disability contribute to humanity? Which disabilities are tolerable and which are not?

There are lots and lots of articles being published these days surrounding pre-natal testing, now that Sequenom released their test that specifically checks for Down syndrome in an unborn child.

Here is an article recommended by some constituents:

Are Kids With Down Syndrome on the Road to Extinction?

The ABLE Act of 2011 has been introduced – Opportunities to learn about it and take action

Monday, November 21st, 2011

The Achieving a Better Life Experience Act (ABLE) of 2011 was introduced on Tuesday as S. 1872 in the Senate and H.R. 3423 in the House.

The ABLE Act will give individuals with disabilities and their families the ability to save for their child’s future just like every other American family, and help people with disabilities live full, productive lives in their communities without losing benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources. The account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.

Below is information on how you can TAKE ACTION to help ensure your senator/representative is on board.

Additionally, be sure to register for the NDSS Webinar that will discuss everything you need to know about the ABLE Act.

Presenters include:

  • John Ariale, Chief of Staff, Representative Ander Crenshaw (R-Florida)
  • Jennifer Debes, Legislative Assistant, Representative Ander Crenshaw (R-Florida)
  • Steve Beck, Parent; Board Member, National Down Syndrome Society; Board Member, Down Syndrome Association of Northern Virginia
  • Madeleine Will, Director, National Down Syndrome Society
  • Sara Weir, Senior Policy Advisory,  National Down Syndrome Society
  • Lasty, watch the video from Lauren Potter (Glee star with Down syndrome) to hear what the ABLE Act means to her.

    ACTION ALERT from NDSS

    NDSS Webinar regarding the ABLE Act

    Lauren Potter talks about the ABLE Act

    DSAOC’s Orange County Buddy Walk is IN THE NEWS!

    Tuesday, November 15th, 2011

    All families and supporters who attended this year’s Buddy Walk know first hand how wet and cold it was.

    We once again extend our sincere appreciation to all of you who rode out the weather with us and enjoyed an exciting and somewhat sunny afternoon.

    DSAOC is thrilled to have our Orange County Buddy Walk story on the National Down Syndrome Society’s National Buddy Walk Blog.

    Irvine Unified School District also placed a story on their website, thanks to one of our parents who promoted their involvement in our event.

    We also can’t forget the story and photo gallery from the Orange County Register!

    I’m pleased to share with you the links below:

    NDSS Buddy Walk Blog

    IUSD Newsflash

    Orange County Register story and photo gallery

    2011 Orange County Buddy Walk – an AMAZING day!

    Wednesday, November 9th, 2011

    DSAOC Thanks YOU!

    Rain didn’t dampen our spirits, or make us forget why we were together on Sunday.

    On Sunday, November 6, DSAOC had 45 exhibitors and more than 2,300 people in attendance at the 11th Annual Orange County Buddy Walk.

    Rain drops began falling just after 7 a.m. and soon came the wind and chill.  At 9 a.m. when the gates opened and we expected to see much fewer numbers, families and supporters arrived with their arsenal of rain gear.

    Families added extra tarps to the sides of their tents to protect their team members from the weather, exhibitors served coffee and hot chocolate, and people huddled together to stay warm.

    Around 10 a.m., when the rain and wind seemed at its worse, people showed their best.  Strangers, linked together by the commonality of having a loved one with Down syndrome, pulled their team tents together for extra warmth, and also invited those without tents to join with them.

    As if Mother Nature had our schedule, just before our Walk was due to start around 11 a.m., the rain stopped and the clouds parted!  More than 2,000 people that hung in there with us when the weather got rough, got to enjoy our live entertainment, including a beautiful stage performance by the Buena Park Hi-Tops, animal and reptile presentations by the Southern California Herpetology Association and The Wildlife Company, and our fabulous live band, The Vince, Bob & Buddy Band.

    DJ Willpower kept the tunes going throughout the day, no matter what the weather was like.  He had a constant dancing audience of our teens and adults with Down syndrome, as well as others who wouldn’t let the rain stop their desire to move to great tunes.

    Grand Marshall, Rex Hudler, thanked our families and supporters for hanging in there with us, and then got to work recognizing our Top teams and fundraisers.  Almost on schedule, our 11th Annual Buddy Walk commenced with happy faces and warmth that glowed from the inside out.

    Thank you to all who participated and supported this event, and the mission’s of the Down Syndrome Association of Orange County and the National Down Syndrome Society.

    Check out the photos and story from the  Orange County Register!

    DSAOC’s photo gallery is LIVE! Our two fabulous volunteer photographers, Alan Madden and Terrie Tavis, have once again captured great memories from our Buddy Walk.

    Alan Madden Photography

    Terrie Tavis Photography

    Dr. De Bord’s “Oral Health and Down Syndrome” Webinar Hosted by NDSS

    Thursday, November 3rd, 2011

    Monday, November 14 at 9 a.m. PST

    This is an encore presentation from August of this year that describes oral characteristics that are common in people with Down syndrome, ways to prevent dental disease, and tips for finding a dentist and having a successful dental visit.  There will be a short Q&A opportunity at the end of the presentation.

    Jessica De Bord is an Assistant Clinical Professor of Pediatric Dentistry at the Herman Ostrow School of Dentistry of USC. Dr. De Bord is the oral health faculty for the Leadership Education in Neurodevelopmental Disabilities at the USC University Center for Excellence in Developmental Disabilities at Children’s Hospital Los Angeles. She earned her BA from San Diego State University and her DDS from the UCLA School of Dentistry. Dr. De Bord completed her residency training in Pediatric Dentistry at the University of Washington (UW) and Seattle Children’s Hospital, where she served as Chief Resident. During her residency she completed a Certificate in Maternal and Child Health through the UW School of Public Health, an MS in Dentistry, and an MA in Bioethics and Humanities.

    Dr. De Bord’s primary clinical and research interests are the oral health of children with developmental disabilities and ethics. She serves on the American Academy of Pediatric Dentistry Committee on Special Needs, is a member of the Clinical Advisory Board of the National Down Syndrome Society, serves on the Children’s Hospital Los Angeles Ethics Resource Committee, and is a board member of the Academy of Dentistry for People with Disabilities. She is a member of the American Academy of Developmental Medicine and Dentistry, the American Society of Bioethics and Humanities, and the American Society of Dental Ethics.

    Slides from the presentation will be posted to www.ndss.org. During the webinar there will be time for Q and A.

    Please feel free to share this webinar and the login information with anyone you feel may be interested in the presentation.

    Register to join!


    Important Call to Action from NDSS and our Down Syndrome Community

    Wednesday, November 2nd, 2011

    Dear Friends,

    Please urge Sequenom to meet all NDSS criteria for prenatal test companies. To see the NDSS Criteria to Evaluate Companies with Non-Invasive Prenatal Diagnostic Tests for Down Syndrome click here.

    Click here to download the customizable letter and email it to info@scmmlab.com.

    Best, NDSS