DSA|OC Blog

If your child with Down syndrome is between the ages of 4-17 years, they have an opportunity to participate in this exciting and informative study.

As many of you are already aware, researchers from the Down Syndrome Program at CHOC Children’s/UC Irvine have been conducting a study on self-concept in children and young adults with Down syndrome. The research team is still seeking volunteers for this study and are scheduling final study visits for May and June.  Please see the information below on our blog posting for a brief description of the study.  If you have an interest in participating, or if you have questions, please contact Eric Doran at (714) 456-8443 or edoran@uci.edu.

This is a FUN way to support DSAOC!  Please join us.

Want to see how much FUN you could have…?  Watch the 2011 Video.

Purchase your tickets today for the DSAOC Banquet & Auction, immediately following our Eighth Annual Golf Tournament on Monday, June 11 at Los Coyotes Country Club.  The Banquet & Auction is from 4:30-7:30 p.m.  

Tickets are $50 each and include:

• Light Hors d’oeuvres and cash bar on the terrace from 4:30-5:30 p.m.
• Live entertainment and access to our exciting silent auction
• Opportunity to witness our Helicopter Ball Drop at 5:30 p.m.
• Enjoy our special guests, delicious dinner, golf awards and live auction

Register online, download the form, or call the DSAOC Center at (714) 540-5794.

Interested in golf?  Spots are still available! Register for golf

Bringing the kids to the Banquet?  Kids meal tickets are available for $20 each.  Call the Center at (714) 540-5794 to reserve.

PURCHASE HELICOPTER BALL DROP Tickets!

Here’s a sneak peek at some of our special guests and auction items!

This is a GREAT story from a dad’s perspective about his son.  Jon Will is showing the world that he is living well with Down syndrome.

George F. Will talks about “Jon’s Gift”.

Read story

Pujols to expand St. Louis-based nonprofit to three other states

The Pujols Family Foundation has announced that it is expanding its support to Kansas City, Nashville, Tenn., and Southern California.

Read more from Stltoday.com

Defying the Odds

This is a great story about true love.  Lisa has Down syndrome and Hal has Cerebral Palsy… and they both have each other.

Besides being a great story, it also contains some important information on certain implications to getting married when you are currently receiving SSI benefits.

Read “Defying the Odds” from Kansan.com

DSAOC would like to extend a very special THANK YOU to Huy Pham and all of his family members and friends who came out to support their annual family golf tournament.  Through this tournament, the group raised almost $3,500 for DSAOC!

Mr. Pham works at the same company as Dr. Jensen, who has a young daughter, Sarah, with Down syndrome.  When the home location for this family event moved from Nevada to Orange County, Mr. Pham wanted to support a charity that had grown close to his heart through his relationship with the Jensen family.

DSAOC was thrilled to be the benefiting charity of the Huy Pham Family Golf Tournament, and we are thankful to Mr. Pham for his desire to support the programs and services we provide to our community.

Thank you!

Our very own Trevor Hendershot from Irvine gets an awesome job at the Angels Team store.

Way to go, Trevor!!

Read OC Register Article

March 21, 2012 marked a very exciting World Down Syndrome Day!  If you haven’t had a chance to see the UN Webcast, below is the link.

Additionally, NBC New York Nightly News aired a segment.  Check it out below.

DSAOC had an exciting fundraiser on March 24, in honor of World Down Syndrome Day.  We had almost 40 people in attendance, 10 of which were individuals with Down syndrome, including our fabulous DJ WillPower.  The event raised more than $800!

Thank you Trinity Episcopal Church for donating the space, a big thanks to our generous Zumba instructors, Gia and Patty,   and we’d also like to thank the sponsors in attendance which included a jewelry vendor, Bubba Sweets and Jamba Juice.  A photo collage from the event is below.

United Nations Webcast of WDSD 2012

View NBC New York Nightly News WDSD Segment

This is Issac…

Isaac is 11yrs old.  He is a loving and very proud big brother.

Meet Mark…

Mark and his BBF….(Best Brother Forever).

Mark is 7 years old.  He loves electronics, playing frisbee and writing.  He also loves his brother!

Meet Daisy…

Her family loves her, and she loves them.  She has a great smile!

Watch the UN Conference video addressing World Down Syndrome Day: http://www.unmultimedia.org/tv/webcast/2012/03/world-down-syndrome-day-commemorative-event-building-our-future-english.html

Join DSAOC at the “Dance 4 Down Syndrome – Zumba Style” World Down Syndrome Day Celebration!

This Saturday, March 24 from 11 a.m. to 12:30 p.m. at Trinity Episcopal Church in Orange – $30 per ticket – includes sponsor goodies, raffle and lots of fun.  Call the DSAOC Center for more information and to purchase your tickets (714) 540-5794  or you can purchase tickets the morning of the event for $40 each.  See you there!

Meet Sydney…

TICKETS ARE ON SALE NOW AT THE DSAOC CENTER

Celebrate World Down Syndrome Day with DSAOC & Friends this Saturday, March 24!

Sponsor goodies, prizes, DJ Willpower & Zumba!

Join our friends, Gia and Patty, along with DJ Willpower, teens and adults with Down syndrome and many others for our “Dance 4 Down Syndrome, Zumba Party!”

This event is an awareness and FUNdraiser.  Register today!

Date: Saturday, March 24       Time: 11 a.m. – 12:30 p.m.

Location: Trinity Episcopal Church, 2400 N. Canal Street, Orange 92865   (in the Youth Center)

Call the DSAOC Center for ticket information (714) 540-5794

For information on Zumba con Gia, visit http://www.zumbacongia.com/

Join us for a Zumba-stic time!  You must be 16 years or older to participate, and all abilities are welcome.  This will be an introductory level of Zumba, so no experience is necessary.

Each participant must pay a registration fee, and your fee includes 1.5 hours of Zumba fun with DJ Willpower pumping out the tunes. You will also receive a raffle entry, water and goodies from our sponsors.

Highlighting our loved ones with Down syndrome in honor of World Down Syndrome Day

Let’s meet Douglas…

Here is “the meez” Douglas!

He is absolutely the best gift from the Lord above.

Such a big heart, everyone wants to take and keep him!

Not to mention how cute he is….

This is my daughter, Krista.   In just a matter of 11 years, Krista has inspired and brought so much happiness to everyone she meets.

Submitted by Krista’s mom, Andrea

SUBMIT YOUR PHOTOS TO DSAOC TODAY AT info@dsaoc.org

We will post your child’s picture along with a couple sentences or word that best describes them.

Meet Amy… she is “unstoppable”

Blair Williamson, “the Photographer”.

Blair has shared pictures with DSAOC in the past, and he sure has an eye for capturing the moment!

Photo submitted by Gail Williamson

Don’t forget… SUBMIT your photo and brief story or word that best describes your loved one with Down syndrome, and it could appear here on our Blog and Facebook pages!

SUBMIT YOUR CHILD’S PHOTO along with a word or phrase that best describes them and the love they bring to your life.  DSAOC will be posting photos/text to their blog/Facebook pages throughout March.  SUBMIT TODAY to:   info@dsaoc.org.

March 21, 2012 will mark the 7th anniversary of World Down Syndrome Day, and for the first time this special day will be officially observed by the United Nations.  Each year the voice of people with Down syndrome, and those who live and work with them, grows louder.

Join DSAOC and other organizations as we celebrate the beauty that individuals with Down syndrome bring to our homes, communities and the world.

Down Syndrome International has created a website especially for World Down Syndrome Day 2012 that includes stories, pictures and even a countdown clock to 3/21/12:    http://www.worlddownsyndromeday.org/

Dean Harrison was born and raised in the Seattle, WA area.  He is the Uncle of one of our wonderful volunteers.

This past January Dean celebrated his 60th birthday with 200 of his closest friends and family.

Dean is a lover of all Washington sports especially the Seattle Seahawks;  his party was Seahawks themed.  The Seahawks mascot “Blitz” made a special appearance at the party where he posed for some pictures and danced with the party goers.

The smile on Dean’s face got bigger and bigger every time he opened a new present; Seahawks apparel, hats, accessories, etc.

Happy Birthday Dean!  Party on…

Standing up for Down syndrome

It was a beautiful day in Huntington Beach during last Friday’s “Surf’s Up” event.

Check out Steve Virgin’s article, and all the great photos captured during this special day.

Standing up for Down syndrome article/photos

Last Friday 2/3, Team Up for Down Syndrome and the International Surfing Museum hosted “Surf’s Up for Down Syndrome“, an event that brought in professional surfers that escorted participating individuals with Down syndrome into the Huntington Beach surf and showed them how to ride the waves.

The after-party was held at Sandy’s Beach Grill, where more professional athletes and special guests greeted supporters.

DSAOC was proud to be a recognized sponsor of this event, and was thrilled to see our Orange County families featured in the OC Register article.

Read the article and view the slideshow

DSAOC is very happy to share a story from one of our families about their son’s wonderful experience as he recently visited educators from his early childhood.

These educators obviously had a positive impact on Ben.  And it looks like Ben had an even more positive impact on them.

“Ben’s Visit to his Elementary School”

DSAOC Staff Member, Kristin Abbas, and her husband Jon welcomed their beautiful baby son, Micah, to the world on December 20, 2011.

Congratulations to you both!

Read story and watch video

You will definitely want to take a few minutes from your day to watch this incredible video – from a Dad’s perspective.

Enjoy!

Youtube link

For parents of children with Down syndrome, a new model by the name of Ryan may have already caught your eye.

Target and Nordstrom have placed Ryan in some of their ads, but haven’t made a big deal out of it.  They show him alongside his typical peers, all looking absolutely adorable!

Check out the story on this blog, and you can also see comments on other blogs by following links in this story.

Model with Down syndrome

A nice story from a siblings perspective.  Happy New Year!

Vanderbilt running back stays motivated

Stacy’s little brother helps him keep focused on positive aspects of life

Read story

The Orange County Down syndrome community is buzzing with the news that Albert Pujols has signed a 10-year deal with the Angels.

We at DSAOC want to be among the first to welcome Albert and his family, wife Deidre and daughter Isabella, to Orange County.  Our admiration grew for Albert when 60 Minutes did this story earlier this year, highlighting not only Albert’s baseball career, but his incredible humanitarian spirit.

Albert’s step-daughter, Isabella, is the reason the talented athlete got involved with Down syndrome.  He met her mom, Deidre, when Isabella was an infant.  Just 18 at the time and newly emigrated to the U.S. from his native Dominican Republic, Albert is quoted as saying he never hesitated to love both Deidre and Isabella.

Since making the big leagues, Albert has been an involved and committed philanthropist, both at home in the Dominican Republic, and in St. Louis, where he, Deidre and Isabella have lived for the past 10 years.

Please join DSAOC in welcoming Isabella, Deidre and Albert to Orange County!

http://www.pujolsfamilyfoundation.org/

Save 20% on over eighty-five books and DVDs on developmental disabilities from now through the end of December 2011 at

www.woodbinehouse.com

Don’t miss this annual holiday family favorite!

Saturday, December 3 from 9 a.m. to 11 a.m. at CHOC Children’s Wade Education Center in Orange.

Enjoy festive decor, holiday music, food, friends and of course SANTA! Guaranteed to put you in the holiday spirit.

This event is especially for families who have children with Down syndrome up to age 12.  All are welcome!

Recommended donation per adult: $5

Need a map?  Visit the DSAOC Website calendar

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 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:

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

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

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

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!

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

Patrick Myshrall scored more than a touchdown for his team on game night.

Watch the video about his story, and the wonderful team mates on both teams.

Enjoy!

Student With Down Syndrome Scores Crucial Touchdown In His First Football Game

Presented by the Sibling Support Project, Sibling Stories features compelling essays about the sibling relationship written by those who know it best.

Please note, after clicking on the link below, you need to scroll down a bit, and you will see the essay.  Enjoy!

The Science of Respect:  A Sibling’s Perspective

Wearing Jersey #30, Jake Martin is thrilled at a chance to play.

This is a great story, so we wanted to share.  There is also a cool video and some pictures.  Enjoy!

DSAOC’s Partners in Education Program (PIE) builds partnerships to shape meaningful education for students with Down syndrome.

DSAOC was thrilled to have so many parents and educators in attendance at our Partners in Education presentation today.  This special presentation, designed for parents, teachers, aides and others who serve students with Down syndrome, discussed key topics on educating students with special needs, and raising the bar on expectations.

Sandi Ames, DSAOC’s Education Consultant, described the benefits of PIE and educator collaboration, and she launched the new education section of DSAOC’s website.

Our featured speaker, Richard Peterson,  LL.M., Director of the Special Education Clinic and Assistant Professor of Law at Pepperdine University, and DSAOC Board Member, shared his insights into the world of special education.

If you are an educator or parent interested in more information about this program, please contact the DSAOC Center at (714) 540-5794.

DSAOC works hard on initiatives promoting Down syndrome awareness, throughout Orange County and beyond.  We ask our community to support our families and our loved ones with Down syndrome, and many of our families benefit from community programs and services.

To give back to our community, and to show people that individuals with Down syndrome care about the environment and nature, DSAOC coordinated a Beach Clean-Up activity for our teens and adults with Down syndrome.

On Saturday, October 1, some DSAOC families met up with the Surfrider Foundation at Newport Beach to learn about the importance of keeping our communities litter free, and how so much trash ends up on the beach after storms.  Besides being very educational, it felt good to be out in nature on such a beautiful day, doing something good.

You can check out more photos from this activity by visiting the photo album on DSAOC’s Facebook page.

A BIG THANKS to all families who participated, and to our wonderful volunteers, Laurie and Abraham.

A nice story that gives us one mom’s perspective on raising a child with Down syndrome.

Amy Julia Becker is an author and a mom who has written often for the NY Times’ Motherlode section. 

Has Down Syndrome Hurt Us?  A question she answers in her story recently published on Motherlode, shared with us by a family who wanted us to share with all of you.

Read story

What a great story to share with you, especially during Down syndrome awareness month!

If you have stories that you would like to share that highlights people with Down syndrome, please send them to me at kperez@dsaoc.org.

Enjoy this touching and exciting story and video. 

Story and video

As parents of children with Down syndrome, I’m sure we can all agree that there are happy times and sad times, and times when having a child with a disability can pose some frustrations and inconveniences. 

For me personally, I’ve definitely experienced all of the above, but I also know that my daughter has caused me to pause at times in my life so I can appreciate something really beautiful that I might have missed had she not been there to direct me.  I’ve learned a new kind of patience and love, and I’ve met wonderful people I never would have known had she not been born with that extra chromosome.

The link below will take you to a story about a young lady named, Melissa, who has already accomplished so much in her young 25 years.  She is loved by her family and friends, and she has that ‘extra’ something special.

Read article

TAKE ACTION TO ENSURE PREGNANT WOMEN AND FAMILIES GET ACCURATE AND UP-TO-DATE INFORMATION ABOUT DOWN SYNDROME

ADVOCACY ACTION REQUESTED: Submit your comment on HHS Regulation by this FRIDAY, SEPTEMBER 30, 2011.

We urge you to visit the NDSS Advocacy Action Center at the link below.  There you will find all the details on this call to action, as well as detailed instructions of what is needed from you.

NDSS Advocacy Action Center

Thank you!

Everyone needs to take a moment out of their day to watch this video!  I had to grab some tissue, so you have been so advised.

This is a great segment that aired on The TODAY Show’s ‘Everyone Has a  Story‘.  Leah Stodden, the middle sister of three, is a talented pianist, she’s engaged to a handsome young man, and she’s an inspiration to her family.  She also has Down syndrome. 

Watch video