This is a great story about how one of our Orange County families learned to accommodate and include their son, Nickolas, in all of their outdoor activities.
Update On Assisted Living Facility In Laguna Beach
In our post on August 11, we reported that the Glennwood Housing Foundation was working hard to collect the additional $1.5 million they needed to close on a deal in Laguna Beach that would provide 45-50 young adults with developmental disabilities a place they can call home.
This highly anticipated facility is now almost a done deal. Read the update below:
The DSAOC Blog - Recipient of the 2010 Top Down Syndrome Blog Award
Medical Assistant Schools has recognized the DSAOC Blog as one of the top 30 blogs relating to Down syndrome. The “Top Down Syndrome Blog” award highlights the very best blogs about Down Syndrome on the internet as determined by the internet community.
Medical Assistant Schools ”Top Down Syndrome Blog” Announcement
Protest regarding the Emmys nomination of the song “Down Syndrome Girl”
Members of the Self Advocate Council of the National Down Syndrome Congress (NDSC) and the NDSC Youth & Adult Committee support team speak out against the decision of the Academy of Television Arts and Sciences to honor the song “Down Syndrome Girl” with an Emmy award nomination in the category “Outstanding Original Music and Lyrics”.
NDSS Joins Forces With Prudential
The Prudential Insurance Company of America, based in Newark, NJ, will provide members of the National Down Syndrome Society (NDSS) support in the area of financial literacy as a result of an agreement the two organizations announced on Monday, August 16.
Read the Press Release
Glennwood Housing Foundation must raise $1.5 million by end of August to close deal on assisted living facility in Laguna Beach.
The Glennwood Housing Foundation is working hard to collect the additional $1.5 million required to close on a deal in Laguna Beach that would provide 45-50 young adults with developmental disabilities a place they can call home.
Orange County Bike Camp - in the news!
Last week at Soka University in Aliso Viejo, forty people with disabilities between the ages of 8 and 24 years came together to accomplish a goal - to learn to ride a two-wheel bike. 
The Down Syndrome Association of Orange County (DSAOC) and United Cerebral Palsy-Orange County (UCP-OC) collaborate to bring this week-long camp to Orange County for the individuals our organizations focus on. Twenty campers are from DSAOC and twenty are from UCP.
We were thrilled to have a reporter from the OC Register take interest in this program. You can link to the story and photos below.
Registration for next year’s camp should open in April of 2011.
Support DSAOC and the 2010 Orange County Buddy Walk
Sunday, November 7 from 9 a.m. to 2 p.m. on the field at Angel Stadium of Anaheim
DSAOC is thrilled to announce that the 2010 Orange County Buddy Walk website is now active!
Register your team today and help DSAOC spread the word about this exciting event. You can also support a team or an individual walker, or make a general donation.
Visit http://www.buddywalk.kintera.org/dsaoc today and help us celebrate the lives of our loved ones with Down syndrome.
2010 Orange County Buddy Walk Sponsorship Information
Whooping Cough - Information you need to know
As you may have heard on the news, there is an epidemic of the Whooping Cough, otherwise known as Pertussis, in California. This year, the pertussis cases reported are the highest in 50 years, even though we are only in August.
Whooping Cough is a very contagious disease that can be passed easily from person to person. It is very dangerous for babies.
Please take the time to read the latest information from the Orange County Health Agency: Whooping Cough
NDSC’s “More Alike Than Different” Campaign
HELP US PASS THE ABLE ACT IN THIS CONGRESS!
As you know, the National Down Syndrome Society endorsed the Achieving a Better Life Experience Act (ABLE) of 2009 (S. 493/H.R. 1205). 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. The ABLE Act will allow individuals with disabilities to create a disability savings accounts or ‘ABLE Accounts’ that would accrue interest tax-free. The account could fund a variety of essential expenses for the individual, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation.
The legislation continues to have widespread, bipartisan support. Currently, H.R. 1205 has 180 co-sponsors, including 19 members of the House Ways & Means Committee.
The time to pass this bill is now- Please contact your Representatives to encourage them to convene a hearing and vote on the ABLE Act today!
More information from NDSS, including a script to help you reach out to your representative.
For Lucy and Al, love since first sight.
Since she was a baby peeking out of her carriage, Lucy has smiled at Al. And Al, in his eighties, has smiled right back, their eyes locking, their hearts touching.
Lucy shares a hug with her friend Al, who has known her family since before she was born.
Down syndrome clinic needs online votes for cash prize - Healthy Living : The Orange County Register
Down syndrome clinic needs online votes for cash prize - Healthy Living : The Orange County Register
Great article on the OC Register blog today about our project in the Pepsi Refresh Project with DSAOC board member Brenda Deeley and her daughter Allison. When you have a chance, go to the Register’s blog post and share this to your Facebook status so it will run in Wednesday’s print edition.
Board Member Brenda Deeley with Daughter Allison
Vote for DSAOC in Pepsi Refresh Project
We’re thrilled to announce that DSAOC’s idea — $250,000 to support the new CHOC Children’s Down Syndrome Program — was accepted for online voting in the Pepsi Refresh Project during the month of June.
This is a huge opportunity to do something great for children with Down syndrome in Orange County by taking a few minutes each day and vote. Simply go to http://www.refresheverything.com/light-registration to register and then return to http://www.refresheverything.com/dsaocclinic each day during June to vote. We are also partnering with the Duke Comprehensive Down Syndrome Clinic which is competing in the $25,000 category to combine our “get out the vote” efforts, so please vote for them as well at http://www.refresheverything.com/downsyndromefreeclinic
Please tell your family, friends, neighbors and co-workers about this and help us support the .clinic.
Support DSAOC by eating at Rubio’s on June 10th
On Thursday June 10th from 2:00 PM to CLOSE Rubio’s will donate 20% of your transaction amount to DSAOC including dine-in, take-out and catering orders when you present the flyer at the link below.
This fundraiser is only for the following Rubio’s locations:
Mission Viejo (Alicia & Jeronimo)
23981 Alicia Parkway Mission Viejo, CA 92691
Orange (N. Tustin Street)
2318 North Tustin Street Orange, CA 92865
Flyer Download: http://www.dsaoc.org/pdfs/Rubios_DSAOC_Flyer_June_2010.pdf
Dr. Brian Skotko, who has a sibling with Down syndrome, created an online course for pediatricians to learn more about their patients with Down syndrome.
Parents, please pass this information and link along to your child’s physician and local clinics.
Harvard Medical School Course:
Down Syndrome: Healthcare Updates for the Primary Care Pediatrician
Acknowledgement: This course is supported by educational grants from Celera and the Applera Charitable Foundation.
Down syndrome is the most common chromosomal condition in humans, but do you know the latest evidence-based medicine on how to best manage these patients? Much has changed since medical school! Many healthcare guidelines and emerging literature are changing the way that individuals with Down syndrome are diagnosed, followed, and managed. Astute physicians can now detect associated conditions before they become symptomatic in an effort to maximize health care development. The goal of this course if to review the latest advances in healthcare management of children with Down syndrome so that primary care pediatricians and other interested health care professionals can provide exceptional care.
Online course information and registration
Going to Bat for Down syndrome
Andy LaRoche, third baseman for the Pittsburgh Pirates, appeared on a TV series called “Facing Life Head On”.
Watch this heartwarming episode about Andy’s passion for touching the lives of children with Down syndrome, and the impact these children have on his life.
Monica & David - a documentary exploring the relationship of a couple with Down syndrome
The film, Monica & David, follows a 30-something couple with Down syndrome as they get married and struggle to assert their independence. It won the Tribeca festival’s award for best documentary feature.
The film is scheduled to premiere on HBO in October of this year.
Best Buddies Prom a special night for all
Shawn Mierzcynski, center, and Katie Jamison, right, join a conga line during the Best Buddies prom at Villa Park High School on Friday.
Great article about a special prom for special students in the OC Register. High school students with disabilities across O.C. party at the Best Buddies Prom at Villa Park High.
Watch ABC’s “What Would You Do?” Tonight!
Video footage from NDSC’s “We’re More Alike Than Different” campaign will be included in tonight’s edition of ABC’s “20/20: What Would You Do?” at 10 PM ET/9 PM CT.
The segment will use an actor with Down syndrome to portray a grocery store bagger who is berated by a customer (another actor). The question posed by the television show is, what will other shoppers do? Hidden cameras reveal the answer and speak to the need for us all to advocate for workers with disabilities. In a clip from the NDSC video, self advocates Christi Hockel and Mark Hublar are shown at their respective real-life jobs at Safeway and Wal Mart, demonstrating that employees with Down syndrome are more like their colleagues than they are different.
Ask your friends and neighbors to watch tonight’s show and then ask them, “what would you do?” You might discover that you have a wonderful opportunity to educate and advocate!
National Down Syndrome Congress
1370 Center Drive, Suite 102
Atlanta, Georgia 30338
800-232-6372/770-604-9500
Thank you Valero!
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 fundraiser - results are in!
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.
The greatest prom date ever!
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.
Patients with Down Syndrome Could Unlock Mysteries of Aging
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.
World Down Syndrome Day 3/21
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
Survey Request from DSFOC
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 http://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.
Orange County Bike Camp 2010
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.
Yahoo for Wahoo’s!
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!
Reaching for the Cure is HOT! HOT! HOT!
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 http://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!
Meeting a Need: Housing Services for Adults with Developmental Disabilities
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.
Birthday Celebrations
DSAOC celebrated the birth of 73 new babies born with Down syndrome in Orange County during 2009. The boys came in ahead with 41, compared to 32 girls. Congratulations to all the new parents!
A big thank you goes to the DSAOC Hospital Outreach Committee for their ongoing work with local hospitals and healthcare providers to help identify these births and coordinate early parent contacts.
DSAOC Awarded Grant
DSAOC has been notified that it will be awarded a $5,000 grant from the Pacific Life Foundation. The funds are to be used to support DSAOC’s healthcare programs. The grant will be formally presented during an awards ceremony at the PLF headquarters in Newport Beach on January 25th.
THANK YOU!
Congratulations on 10th Anniversary
The Children and Families Commission of Orange County is celebrating its 10th anniversary in 2010. With funding from Proposition 10, the Commission has been able to support organizations and projects that help the youngest members of society get a solid start in life.
DSAOC programs such as, Mano a Mano, Partners in Education, and our new pediatric healthcare program have all received funding from the Commission this year. THANK YOU!
January Series Topic Announced
Dr. Anthony Chang
Anthony Chang, MD, MBA, MPH - Medical Director at the CHOC Heart Institute will be the guest speaker for our next session of the DSAOC Healthcare Series.
Scheduled for 6:30 - 8:00 PM, on Wednesday, January 20th at the DSAOC Center, the topic will be Cardiac Disease in Children and Young Adults with Down Syndrome.
We’re sure there will be alot of interest, so register early to make sure you have a seat. To register call DSAOC at 714-540-5794, or click here.
“Adventures in Wonderland”
Don’t be late for a very important date!
Sixth Annual DSAOC Red Carpet Ball
7:00 PM - 11:00 PM, Saturday, February 27th
DoubleTree Hotel, 201 East MacArthur Blvd., Santa Ana, CA 92707
For teens and adults with Down syndrome 15 years and older.
Call DSAOC for more info and to register.
IEP/Young Child Workshop
Tuesday, January 26th from 9:00 AM - 1:00 PM at the DSAOC Center
The presenters (Sandi Ames & Catherine Raack) at this workshop will help participants learn to develop an education program that focuses on individual unique needs and defines the goals and services necessary for their student to benefit. Collaborative skills to assist parents in feeling confident as equal and active members of their child’s IEP team will be highlighted.
This workshop is geared toward parents whose children are in preschool through early elementary school.
Call DSAOC at 714-540-5794, or click here to register for the workshop.
Happy New Year!
Wishing you a happy, healthy, and safe new year!
From the DSAOC Board & Staff
First Graduates from Mano a Mano Class
Our new DSAOC Mano a Mano (Hand in Hand) Class recognized its first graduates in December. The 10 week program, funded with support from the Children & Families Commission of Orange County, is focused on our Spanish speaking families. Designed to enhance early literacy for children (3-6 years of age), while also helping the parents better understand the IEP process and improve their own language skills.
CONGRATULATIONS to the graduates; and many THANKS to our Mano a Mano Team teachers: Monica Lucero, Yessica Gandara, Cristina Mamac, and Analiz Pulido.
DSAOC Awarded Grant
In November, DSAOC was awarded a $10,000 grant through the Orange County Community Foundation.
In cooperation with private donors, the Foundation has been working for more than 20 years to improve the quality of life here in our community.
THANK YOU!
300 Join Santa for Breakfast
Our annual holiday event was a great success again this year with more than 300 people dropping by to chat with Santa this past Saturday morning.
To view some of the photos taken during the breakfast just click here: Breakfast with Santa 2009
Many thanks to the DoubleTree Hotel, the Volunteer Clowns of Orange County, and our always fabulous volunteers!
Check Out Buddy Walk Photos
A big thank you to the volunteers, sponsors, exhibitors, vendors, and participants that helped make Buddy Walk a great success again this year! And, a special shout out to the Team Captains that work so hard!
Buddy Walk contributions will still be accepted through the end of this year, so there’s still time. We’ll keep you updated.
Be sure to check out the first of our photos from the 2009 Buddy Walk. It was a beautiful day and these are beautiful photos! These were all taken by photographer Terrie Tavis.
Click here (use password: sunshine) to view 2009 Buddy Walk Photos.
OCTLA Silent Auction Contribution
Jacob Braun (Age 21, Tustin)
The Orange County Trial Lawyers Association generously donated more than $20,000 to DSAOC from a Silent Auction conducted at their Annual OCTLA Top Gun Awards Dinner held at the Balboa Bay Club on Saturday, November 21st. Board President - Gerard Jensen was joined by Jacob Braun in representing DSAOC at the event. Jacob did us proud and received a standing ovation following his comments to the audience.
Thank you to the Officers, Board, and Members of the OCTLA for making this contribution possible.
Healthcare Series Off To Great Start
Parents filled the room on November 18th for the inaugural session of DSAOC’s new Healthcare Series. Dr. Ira Lott spoke to the group on the topic of Down Syndrome: A Link Between Development and Aging.
Stay tuned for more updates on these informative sessions focused on a wide variety of healthcare issues related to Down syndrome. The next one is scheduled for January 20th.
Partners in Education Invites Your Help!
The DSAOC Partners in Education program connects educators, therapists, paraprofessionals, and school/district administrators with the training, resources, and support they need to help educate students with Down syndrome. During the past year, the program has been successful in establishing many of these connections at the district and SELPA level throughout Orange County.
We are now recruiting parents to assist in the outreach activities. Would you like to join us, or maybe just learn more about the effort?
Call the Center at 714-540-5794, or email sames@dsaoc.org to find out more.
Buddy Walk Entertainment Line-up
Kim Holloway & daughter Olivia
In addition to our headliners - THE ENGLISH BEAT…we’ll also have some other exciting live entertainment for you on Buddy Walk Sunday, including Chelsey Sanchez, and the DagumDragon Band with Kim Holloway.
Schedule of Events
9:00 AM - Registration/Field Access Opens
10:00 AM - Live Entertainment: Chelsey Sanchez
11:00 AM - Buddy Walk
12:00 PM - Live Entertainment: DagumDragon Band
1:00 PM - Live Entertainment: The English Beat
2:00 PM - Event Closes
Chelsey Sanchez & brother Bryce
Remember - lunch will be on your own so we invite you to bring a picnic. The stadium will also have a concession stand open near Gate 1 for food purchases. Plus we’ll have lots of your favorite snacks located in booths around the field. Water will also be available for everyone on the field.
We’ll see you on Sunday!
Buddy Walk Will Be Broadcast Live
Even 
if you can’t join us at the Buddy Walk this weekend - here’s the next best thing.
In collaboration with iBN Sports, we are excited to announce that we will be broadcasting live from the DSAOC website.
This will be our first live broadcast and we know it will enhance our efforts to expand visibility and public awareness.
So have your friends and family tune in to watch the festivities and live entertainment on the field, as well as all the teams finishing the walk.
Edwards Lifesciences Grant to DSAOC
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
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
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
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
