DSA|OC Blog

Valero Supervisors, Mark Rodriguez and Matt Wilkins along with other Valero employees join Tres Heald (DSAOC Board President), Dr. Lott (Director, Child Neurology UCI/CHOC) and children and teens with Down syndrome at CHOC Children’s in Orange.

Since 2003, the Valero Refinery in Wilmington, CA has supported DSAOC through its annual Texas Open Benefit for Children Golf Classic.

Valero recently delivered a check to DSAOC for $10,000 to support the new CHOC Children’s Down Syndrome Program – a state-of-the-art pediatric clinic focused on the unique health care needs of children with Down syndrome.

Formed by an alliance between CHOC Children’s and the Down Syndrome Association of Orange County, the clinic is the largest and most significant project undertaken in DSAOC’s history. Financial support from the community is essential to the success of this program and DSAOC is extremely grateful to Valero for the continued show of support .

Thank you Valero!

For information on how you can contribute to the CHOC Children’s Down Syndrome Program , please contact the DSAOC Center at (714) 540-5794 or via e-mail at info@dsaoc.org. For information on the program, click here.

Wahoo’s Fish Taco and Festival of Children recently worked together to help non-profits in Orange County raise funds for their programs and services.  DSAOC was thrilled to be involved in this fundraising opportunity and recently received a check for more than $500 from the Festival of Children!   

A big THANKS to our DSAOC families and friends who participated in this fundraiser, as well as to Wahoo’s Fish Taco and the Festival of Children for providing this opportunity.

VILLA PARK – The girl was nervous.

Would the boy say yes and go with her to the prom?

Kayleen Boland, 17, a senior at Orange Lutheran High, went all out for the big moment.

She walked up to Kevin Van Matre’s house carrying a homemade vanilla cake, green and blue balloons, and a big blue sign that said:  Kev! Will you go to the dance with me?  Kayleen punched the doorbell.  As she waited for Kevin, 18, to open the door, she thought:

What if he says no?

They met three years ago at 5 a.m. high school swim practice when they shared the same lane – Kayleen, the 6-foot-tall brunette, and Kevin, the 5-foot-2 boy with dark blond hair.

“We just clicked,” Kayleen says.

The more experienced of the two swimmers, Kevin started giving Kayleen unsolicited tips. 

“He likes to give orders,” she says.

“Kind of, yes!” he says.

They exchanged numbers, and started talking daily.  Kevin would begin every conversation the same way:  “KAYLEEN! What’s uppppppp! It’s Kev! Whatchya doin?!”

Kayleen loved Kevin’s giddy smile and his crazy dance moves, and the simplicity of their friendship, free of the usual teenage dramas.

Read more

Marybeth Solinski gets ready to blow out the candles on her 59th birthday cake last fall with her niece Sarah Gaziano, 22.

In 1950, when Marybeth Solinski was born, a diagnosis of Down syndrome was practically a death sentence.

Children with the condition often died before their 10th birthday. Yet Solinski, at 59, has outlived her parents. She has even joined AARP.

Her longevity illustrates the dramatic progress for people with Down syndrome. Thanks to better medical care, the average life expectancy for a child with Down syndrome is now 60 years, according to the National Down Syndrome Society, which estimates that about 400,000 people are living with the condition in the USA.

As they live longer, adults with Down syndrome who have an extra copy of chromosome 21 are teaching scientists about the genetic roots of aging, says Ira Lott, head of pediatric neurology at the University of California-Irvine School of Medicine.

Scientists today are searching this chromosome, which contains only about 200 of the body’s roughly 20,000 genes, to learn why people with Down syndrome suffer disproportionately from some health problems, such as Alzheimer’s disease, but are spared many others, such as heart attacks, strokes and certain types of cancer.

Read more

Down Syndrome International (DSI) has officially earmarked March 21 as World Down Syndrome Day (WDSD). The date was chosen to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome and is used synonymously with Down syndrome. Commemoration of World Down Syndrome Day started on March 21, 2006, it has grown manifold globally.

The annual observance of WDSD aims to promote awareness and understanding of Down syndrome and related issues and to mobilize support and recognition of the dignity, rights and well-being of people with Down syndrome.

Temecula Valley’s World Down Syndrome Day group will be having various activities for children and information for parents on Sunday, March 21 from noon – 4 p.m. at Sensory Time, 41421 Date Street, Murrieta, CA 92562.  Sensory Time’s phone number is (951) 600-0305.  If you have questions you can contact Sherry Tsagakis, Chairperson of Temecula World Down Syndrome Day, at (951) 473-6497 or at specialkidzphotography@live.com

Down Syndrome Foundation of Orange County (DSFOC) is conducting a survey to help shape summer educational support programs for families.  Your input will help them decide which areas are of most need.  The survey should take only a few minutes to complete.  View the survey at  https://www.surveymonkey.com/s/GZHFM8Q.  If you are not interested in summer programs, but would like to make sure that the Down Syndrome Foundation has your current contact information, please complete the first page of the survey.  Feel free to forward the survey link to any other families you know who may be interested. 

For more information, contact Nicki Presby, Director of Education and Outreach at 949.757.1177 or  npresby@dsfoc.org.

In partnership with United Cerebral Palsy of Orange County, BIKE CAMP ’10 will be available for one week, August 2 – 6.  The purpose of this camp is to assist individuals with disabilities in learning to ride bicycles confidently and without training wheels.  This camp has been conducted in many parts of the country, and this is the third year we are proud to offer it in Southern California.  We are grateful to Soka University of America in Aliso Viejo for providing us their air-conditioned gym for the camp. 

The number of campers is limited to 40; a lottery will be held to select campers.  

Information and requirements      Registration

All applications MUST be received by April 16th.

Wahoo’s Fish Taco and Festival of Children are working together to help non-profits in Orange County raise funds for their programs and services.  DSAOC is thrilled to be involved in this fundraising opportunity!  Between Monday, March 8 and Sunday, March 14, anyone who presents this Wahoo’s flyer during their purchase will be enjoying a delicious meal and also donating 20% of their bill to the Down Syndrome Association of Orange County.

How can you help?  Download the flyer, print it out, pass it around and take your family and friends to Wahoo’s!  Thank you!

The Down Syndrome Association of Orange County is joining with the Pediatric Cancer Research Foundation at the Cinco de Mayo Half Marathon at the Irvine Spectrum Center on Sunday, May 2 to raise funds for pediatric cancer research and the new CHOC Children’s Down Syndrome Program.

Did you know that on average one in every 95 children with Down syndrome will develop leukemia, compared with a rate of one in every 2,000 in the typical population?  While the vast majority of children with Down syndrome will never develop leukemia, the disease remains one of the major health care concerns for our community.

You can sponsor the DSAOC team or register for the half marathon, 10K run, 5K run/walk or 1K kids fun run.  Most of the registration fees go directly to the Pediatric Cancer Research Foundation.  However, your sponsorship dollars, plus $5 from each registration will go toward the CHOC Children’s Down Syndrome Program.  

REGISTER TODAY!

Visit https://www.pcrf-kids.com/reachingforthecure/  Click on “Register Here,” and then select “Join a Team.”  Our team is listed as “Down Syndrome Assoc. of OC.”

If you prefer to register or sponsor over the phone or by mail, please contact DSAOC (714) 540-5794.  Thank you!

Advocates for Adults with Developmental Disabilities (AADD) is championing a simple but clear plan for the future: sustainable and inclusive residential communities in which people with developmental disabilities can live safe, productive and independent lives. Working with civic, business and government leaders, AADD is pursuing construction of housing to meet this growing need.

AADD’s hope is to provide a plan and vision for Orange County so that public housing agencies and service providers will join with them as they forge partnerships to work toward a common goal: to provide appropriate housing and services for this deserving population.

Want to get involved? E-mail Advocates for Adults with Developmental Disabilities at aadd.housing@yahoo.com.

More About Advocates for Adults with Developmental Disabilities
In 1995, a handful of parents in Irvine first met around a dining room table to discuss the eventuality of what would become of their children with developmental disabilities when they were no longer able to care for them. It was their desire to provide a plan that could serve more than just their own children, and that could be used as a model to serve other communities nationwide. The core group has grown with other interested parents and parties. To help push the agenda forward, AADD recently partnered with Community Housing Resources Inc. (CHRI), a non-profit agency, dedicated to providing housing opportunities to people with disabilities.