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Archive for October, 2009

Edwards Lifesciences Grant to DSAOC

Thursday, October 22nd, 2009

 

Michael Mussallem - Edwards Lifesciences CEO (center), with Tres Heald and Lanny Hardy

Michael Mussallem - Edwards Lifesciences CEO (center), with Tres Heald-DSAOC Bd. Mbr., and Lanny Hardy

 The Edwards Lifesciences Fund recognized DSAOC as the recipient of one of it’s 2009 community grants during an Awards Reception held on November 12th at their corporate offices. 

Headquartered in Irvine, the company annually provides philanthropic support to local nonprofit organizations in order to advance a variety of worthy projects in the communities where their employees live and work.  

The grant will be used to help fund DSAOC’s initiative to provide healthcare programming for parents and outreach activities to medical professionals.

Legislative Action Alert

Wednesday, October 21st, 2009

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The Trisomy 21 Translational Research Parity Act of 2009 (“21 Act”) has been introduced in Congress and is aimed at expanding, intensifying, and coordinating Down syndrome translational research across the National Institutes of Health (NIH), the Centers for Disease Control and Prevention, and other Federal agencies. 

The NDSS Public Policy Center has issued an Action Alert asking for assistance in identifying and securing more co-sponsors for the legislation.  To learn more about the bill and how you can help by contacting your Congressional Representatives: “21 Act” – ACTION ALERT

Kid’s Health Magazine

Tuesday, October 20th, 2009

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DSAOC’s new alliance with CHOC Children’s is highlighted as a featured story in their upcoming fall issue of Kid’s Health

Announcing the new pediatric Down syndrome healthcare program, the article discusses how it’s designed to provide thorough evaluations, assess each child’s particular medical issues, and coordinate access to a team of medical specialists. 

Work on establishing this alliance began more than a year ago and it’s been a top priority for DSAOC.   We look forward to this becoming the model “one stop” program in the region, that offers comprehensive care through a weekly outpatient clinic; assists parents in navigating the healthcare system; and educates referring healthcare providers and families to the unique medical needs of children with Down syndrome. 

To read the article: Kid’s Health Fall-2009

Weekend Event Raises Awareness & Funds

Monday, October 19th, 2009
Tyler Orbaker, age 6

Tyler Orbaker, age 6

Thanks go to Kevin Orbaker and his family for organizing an event this past weekend at Rudy’s Pub & Grill in Foothill Ranch to help support DSAOC and raise Down syndrome awareness. 

With help from KROQ and DJ Lighting, the event included a free concert by the U2 tribute band, The Joshua Tree.  The event also raised funds with donations going to DSAOC.  Great work Kevin and thanks to all involved – it’s much appreciated! 

The OC Register ran an article about the event on Saturday that includes an interview with Kevin: OC Register Article 10/17/09

The ENGLISH BEAT at Buddy Walk

Friday, October 16th, 2009

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The Buddy Walk has always been more than just a walk and this year it’s a concert too, with the announcement that the ENGLISH BEAT will be joining us to perform a musical set on Sunday, November 8th at Angel Stadium.  The band has agreed to take part in our biggest event of the year to help celebrate and demonstrate the value of our friends and family members with Down syndrome. 

You don’t want to miss this.  If you haven’t already done it – register today

Click:  Buddy Walk Registration Site

Estate Planning Seminar Held at DSAOC

Thursday, October 15th, 2009

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We had a full room of parents attend our seminar on Wednesday, October 14th at the DSAOC Center on the subject of estate planning.  The session was led by Xavier Zatizabal, MBA, a financial planner with MetDESK.  Thanks Xavier!

Be sure to watch the DSAOC calendar for other upcoming workshops on important financial and estate planning topics.

New Healthcare Series Announced

Tuesday, October 13th, 2009

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DSAOC is initiating an ongoing series of parent healthcare seminars to be held at the DSAOC Center.  Designed to address a wide range of important health topics related to Down syndrome, the presenters will include physicians, therapists, and other healthcare providers.

The first seminar will be conducted on Wednesday, November 18th from 6:30-8:00 PMIra T. Lott, MD will be presenting on the topic of Down Syndrome: A Link Between Development and Aging.

Dr. Lott is the Division Chief of Pediatric Neurology and the Medical Director of Neurology at CHOC Children’s.  He is also a Professor of Pediatrics and Neurology at the UC Irvine School of Medicine. 

Be sure to sign up early for this presentation by calling the Center at 714-540-5794, or online by clicking here.

DSAOC Trick or Trunk

Monday, October 12th, 2009

pumpkinWe had more than 100 people attend DSAOC’s Annual Trick or Trunk event on Saturday at Mile Square Regional Park.  Thanks to everyone that helped make it a great success!

REMINDER:  For teens with Down syndrome ages 12 to 17.  This Friday, October 16th from 7:00 – 9:00 PM there’s a Halloween Bash scheduled at the DSAOC Center.  Come dressed in costume and join your friends for an evening of fun and games.  RSVP by calling the Center at 714-540-5794, or online by clicking here.

iBN Sports Partners with DSAOC

Monday, October 5th, 2009

ibn-sportsiBN Sports announced today that it will become the official internet broadcast provider of the DSAOC. 

The new relationship will allow DSAOC to take a big step forward in telling its story – including the ability to archive videos, produce documentaries, and live-stream events and presentations.  These opportunities will greatly enhance our public awareness efforts, as well as allow us to develop a broad library of valuable online tools and resources for our families. 

Be sure to watch for iBN Sports at the Buddy Walk on November 8th.  To read the press release issued today, click here:   iBN Sports Press Release 10/5/09

Shop for Change

Monday, October 5th, 2009

3One of the new features on our website is an exciting and unique online auction and shopping site, powered by Dubli.  And, DSAOC can receive up to 30% in commissions every time you use it.  Here’s a chance to find some amazing deals and help DSAOC at the same time.  

 

Ready for a new Mercedes, BMW, or Porsche?  Dubli has a $47,000 car surprise on auction now… click here to check it out: https://us.dubli.com/luxury-sports-car__3_4176

Registration is free and everyone that signs up by November 9th will get free credits to get started.  Shop for Change to learn more about the site and find out how to get your free credits!

Survey Request from NDSC/NDSS

Friday, October 2nd, 2009

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NDSS and NDSC are jointly requesting parents to complete a survey regarding the extent to which restraints. seclusion, and aversive procedures have been used with students with disabilities and special needs in public or private schools, or in residential facilities.  The survey is available for completion until  October 12th.  For more info and survey click here: NDSS/NDSC SURVEY

 

Add the Allergan Foundation…

Thursday, October 1st, 2009

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 …to the growing list of organizations, foundations, and corporations supporting DSAOC programs.

This week, the Allergan Foundation awarded DSAOC with a grant to help in our healthcare education and pediatric clinic campaign.  Others will be announced soon.  Among those already committed to the clinic campaign: OC Children & Families Commission, Ingram Micro Corporation, Valero Energy, Team Up Foundation, and Clipped Wings Foundation.  And let’s not forget all the individual donations to support the clinic campaign – THANK YOU!

Spotlight on DSAOC

Thursday, October 1st, 2009
Ryan & Blake Sessler

Ryan & Blake Sessler

 

DSAOC is featured in the October issue of the OC Gazette which reaches more than 100,000 homes in Orange County.  The article includes a really nice interview with Ryan Sessler about his son Blake.  And, it gave us another chance to promote the 2009 Buddy Walk.  Nice way to start out Down Syndrome Awareness Month!

To read the article online:  October Issue – OC Gazette