Certain Proof: A Question of Worth

A revolutionary documentary has entered the world through the hard work of director Ray Ellis. This highly regarded film master has addressed a topic that is common in our daily lives: how can children and teens with cerebral palsy thrive in public schools? The documentary follows the lives of three children with cerebral palsy and documents their everyday routine struggles that come along with attending public school. Throughout the film, the children try to prove their worth and ability to be taught just as any other child can. The three individuals face countless barriers to a successful education, and with the help of their zealous mothers, they join with many others to fight for a voice in education. This film is the perfect starting point to fight for your child’s voice too. To view a trailer of the film, click on the link below. We encourage you to take a few minutes and watch it. It will without a doubt leave you wanting to see more!

In this photo (from left to right): Kevin and Nicole Elder, director and producer Ray Ellis, Cathleen Collins, and Pam Patterson.

You can view the trailer for this movie at the below link:

For more information about the movie and the director, visit the site below:

http://us2.campaign-archive1.com/?u=4ef7641a9b0215c156b3a4fd6&id=42d6b9e7ec&e=0306d261e3

 

 

 

Written by: Ellie

Help a Child With Special Needs

Hello Friends,

Alexa Andersen is a gregarious, intelligent 11 year-old who loves Disneyland and has an enormous crush on Harry Potter. She spends her time with family and friends just like any other 11 year-old, but with one difference… Alexa, my daughter, has severe cerebral palsy (CP).

 Born prematurely at 28 weeks, Alexa was left with pervasive damage to her brain and we were told she would have CP. As the years passed and milestones were missed, we discovered that her disabilities were much more involved than we had hoped and that Alexa would not progress beyond the physical capabilities of a young child, restricted to a wheelchair. Today, Alexa has reached an age and maturity where she is aware that her disability is not going away, but she does not have to go through this alone. Along with her family support, Alexa’s therapists at United Cerebral Palsy of Orange County (UCP-OC) help her look forward to a future of independence.

 Upon moving to Southern California I was uncertain where to turn to get the best care for my daughter. Like most parents of disabled children, I worried that I  wasn’t doing enough and that Alexa was missing out on opportunities and treatments. I knew there was more out there. After floundering between different options, one of Alexa’s therapists suggested we explore the myriad of services available at UCP-OC. I immediately enrolled Alexa into the physical therapy program at UCP-OC twice a week and finally found peace of mind. Raising a child with developmental disabilities can be an extremely isolating experience as a mother. A place like UCP-OC offers classes and options creating a community of support. I was not alone anymore.

 Since coming to UCP-OC there are no missing pieces, no fears of undiscovered opportunities and the future looks brighter. UCP-OC takes our concerns and dreams seriously while walking side by side with us through our journey towards a Life Without Limits…we have a lifetime partner.

I still get emotional when I think about the “what ifs”. What if we had not discovered UCP-OC and the abundant wealth of knowledge that they provide? Unfortunately, this is a reality for many families who cannot afford many services for their child. You can make a difference! You can help a child with special needs. What if we as a community strive together to help families and children live their lives with hope rather than without? With continued deep budget cuts on the horizon, UCP-OC can no longer rely on government support and must reach out to the community, loyal donors and families to ensure a future. This year I encourage you to give to UCP-OC. Together let’s help children like my daughter Alexa receive the help and therapy needed.

Alexa dreams of living in her own apartment in the Big Apple with a doorman and an elevator. She dreams of someday having children of her own. UCP-OC is helping my vivacious Alexa achieve her dreams one day at a time! I am giving back to UCP-OC this spring because of the difference the organization has made to our lives. I ask you to do the same. Every gift makes a difference! Thank you for your donation and for touching the life of a child.

Sincerely,

Jane Andersen

To donate or find out how, please follow this link: Donate Now!

More Than Just a Sash and a Crown: Audience Award for Best Documentary

Sunday, May 1st was a beautiful day in Orange County, where the Newport Beach Film Festival premiered “Defining Beauty: Ms. Wheelchair America.” This documentary captures five women’s journey to the 2010 Ms. Wheelchair America pageant. The Ms. Wheelchair America contest has been around for 37 years educating and advocating for the more than 54 million Americans living with disabilities. Unlike other beauty pageants, this is a contest that looks past mere beauty and looks at the heart, achievements and communication abilities of the contestants to find the most accomplished and articulate spokeswoman for persons without disabilities.  This film looks at the different women and how they push themselves past their limits and live a life of strength, courage, competition, love, intelligence all while being daring to take a chance. As the “Defining Beauty” states, it is “more than just a sash or a crown.”

After the film premiered, audience members were allowed the opportunity to ask the women starring in the film questions. Some highly regarded qualities of the film included the truth and the realness behind the women’s lives, as well as the dramatic and emotional pageant itself. The film received a warm welcome at the festival, receiving the Audience Award for Best Documentary!

After a very successful premier at the Newport Beach film festival, “Defining Beauty: Ms. Wheelchair America” will turn its wheels towards Atlanta’s “Taste of Beauty Weekend.” Defining Media LLC, the production company behind “Defining Beauty”, has partnered with Burton Blatt Institute of Atlanta to help raise funds for the film and for the support of children with disabilities across the country.

Help us spread the world about this movie and this beautiful story of women living their lives without limits!

You can view the trailer here: http://www.youtube.com/watch?v=P6Cn09NIOZo&feature=youtube_gdata

For more information, please visit Defining Beauty’s:

Facebook page: https://www.facebook.com/pages/DEFINING‐BEAUTY/10839020811

Blog: http://definingbeautydoc.blogspot.com/

The ladies were given the red carpet treatment when they arrived at the event. Here are some photosof the ladies!
  

 

 

 

 

 

 

Written by: Elizabeth Wylie

Team Jake

May 1, 2011 is the Orange County Marathon! We will be there with Team Jake, running (or passing out water) for a purpose. Team Jake hopes to have 200+ runners and you could be a part of it!

Join us by volunteering a few hours of your early Sunday morning by cheering on our team and passing out water to all participants.  The OC Marathon is all over Newport Beach, beginning at the OC Fair Grounds. All volunteers will receive a “Team Jake” shirt as a thank you for supporting our team.

Email ysalcedo@ucp-oc.org for more information and event details.

To donate to or join Team Jake please go to http://www.active.com/donate/teamjake2011/jenee 

Alison will be running for her son Jake and in support of United Cerebral Palsy of Orange County.  Here is the family’s touching story…

Team Jake is a group of runners, walkers, fans, and volunteers who help us embrace the OC Marathon event and all that it means to our family. January 8th, 2006 I ran (very liberal use of that term) my first marathon. I ran to honor my son Jake, to raise money in support of United Cerebral Palsy of Orange County, and to “cross something off the list”. The entire Robert/Holman family waited patiently for my finish (just under six hours….poor preparation…ugly execution!!) and we spent the afternoon together celebrating a rather unimpressive finish; but the OC Marathon had given us reason to spend the day together. We did not realize what an amazing gift that was until the next morning when we discovered that our precious son, Jake Ryan Lee Robert, our four and a half year old boy with Cerebral Palsy had passed away in his sleep. Team Jake was born. Since then, each year our amazing network of family, friends, and numerous friends and family of friends have joined us.

Each year brings new runners, new cheerers, new memories and an enduring sense that the wonderful spirit of Jake lives on. We always have amazing support at the finish line (including an extremely pro- Team Jake announcer) and we were fortunate to spend some post race time together at The Yard House last year……so fantastic to see everyone after the race to share war stories and introduce people to the amazingly diverse group that makes up our team. We will definitely plan a similar post-race event this year.

Why do we “Team Jake”? 1) Team Jake intends to support and encourage all of the special needs kids of Orange County and beyond who are striving to take their first step, eat on their own, hold their heads up or those simply fighting for the next milestone in their development; big or small. We appreciate the amazing spirit of these kids, their families, and friends and Team Jake celebrates their journey. While these kids fight to take step one, we run and walk knowing what a privilege each step we take is…..all the way through the finish line. 2) Team Jake desires to honor the memory of our sweet boy, Jake Ryan Lee Robert. Jakey never took a step on his own, never said a word , and never reached some of the most basic developmental milestones we often times take for granted with our children. Jakey opened our hearts and guided us to a perspective of simplicity we fight hard to maintain. He was unimpressed by money and power. He traded only in Love and accepted us without condition. Team Jake strives to bring this spirit to the OC Marathon event each year to keep Jake’s powerful perspective alive and spreading. 3) I (Steven)”Team Jake” because I have yet to find a way to feel closer to my son….In 2006 after struggling through 26.1 miles, Alison handed me Jakey and he joined me as I finished my first marathon. He was bouncing up and down as I waddled over the line….and the movement made him laugh just a bit. I run my 26.1 miles now because no matter how many times they change the course or the date of the event, when I get near that finish line I can feel Jakey’s weight in my arms, I can recall how soft his air was that day, I can hear his laugh in my ear and I can see his face contorting into his little smile that changed the Robert family forever. For that, I will run anywhere, anytime.

Highlights for Team Jake in 2010: – Over 125 runners participated for Team Jake including 2 first time marathoners and numerous first time half marathoners. – Team Jake runners traveled from Texas, Nevada, Arizona, Tennessee, & all over California to participate. – Our youngest runner was Jake’s brother Brady (4 years old, 5K) and our senior member was Jake’s Poppa Jud (let’s just say barely south of 70…half marathon!!) – Jakey’s older brothers Tyler(12) and Zach(10) completed the half marathon for the fourth consecutive year and are looking forward to number 5 in 2011 !!! We are amazed at how Jake continues to connect us with great people who come out and support our efforts each year. We look forward to another amazing day celebrating our sweet boy. 

We have high hopes for Team Jake in 2011. We dream of having 200 + runners. We are determined to raise $25,000 for United Cerebral Palsy of Orange County to help them continue to deliver amazing therapies and support to special needs kids in Orange County. And, we hope to share our Jakey, and the amazing impact he continues to have in this world, with anyone willing to listen.

With tremendous love, humility, & gratitude, Steven, Alison, Tyler, Zach, Brady, Cody & Our sweet angel Jake

How to Help

What if United Cerebral Palsy earned a donation every time you searched the Internet? Or how about if a percentage of every purchase you made online went to support our cause? Well, now it can!

With deep budget cuts looming in the air, United Cerebral Palsy of Orange County could use your help more than ever! There are many ways to help, but today we want to focus on an SIMPLE yet effective way to help out UCP-OC called GoodSearch.com. Last month we informed our parents about GoodSearch.com and our numbers multiplied by 8! Our hope is that we can utilize this site to raise support by using a medium our families already use. It is truly as easy as using your search engine or shopping online. GoodSearch.com donates half its advertising revenue, about a penny a search, to the charity you designate.

Goodsearch.com supports organizations you care about (UCP-OC) through partnering with stores you already shop at online! Up to 30% of your online purchase will go to UCP-OC. Hundreds of great stores including Amazon, Apple, Target, Gap, Best Buy, eBay, Macy’s and Barnes & Noble have teamed up with GoodShop and every time you place an order, you’ll be supporting your favorite cause.

You can also use it as a search engine, just like you use Google or yahoo search. UCP-OC receives a small donation each time you utilize GoodSearch once you’ve designated UCP – Orange County as your charity. GoodSearch is powered by Yahoo so you know your results will be accurate.

It’s so easy to continue supporting UCP-OC! Simply go to GoodSearch’s website and download the tool bar. Indicate United Cerebral Palsy (UCP) – Orange County as your charity of choice. http://www.goodsearch.com/toolbar/united-cerebral-palsy-ucp-orange-county

For more information go to www.goodsearch.com or read about them in The New York Times, ABC News, USAToday and more.

Also, don’t forget you can find us on facebook! We look forward to hearing from you on our page! Please share stories and let us know how UCP-OC has been involved with your family. We love building relationships with you! http://www.facebook.com/pages/United-Cerebral-Palsy-of-Orange-County/40306459081

written by: Elizabeth

Sign up for Bike Camp 2011

Last year at the OC Bike Camp, children were given the opportunity to learn the freedom of riding a bike. Kathrina told us her story about her son’s experience at the weeklong camp.

“My son has autism and everyone at the camp did not think he was going to make it on a bike the first day because of his refusal/behaviors. He biked everyday and on the last day, I requested if they could put him on the bike without any training wheels. His two volunteers didn’t think he could do it but I begged that they try it for just two minutes, and after if he could not do it we can stop. They tried it and to their surprise Joshua stayed up! Then Joshua went on to bike the last 10 minutes. Boy, was I rejoicing!
            These small miracles bring so much joy to parents. I remember the lady from the organization asked that all the kids to be placed on a regular bike, and we watched all the children bike successfully without training wheels. Life without limits is the motto for UCP and it is a good one to live by despite the disability of these children. Many parents came up to me at the end and said thank you. I was glad to be there the last day to encourage that opportunity for my son, as well as other kids.”

Join us as United Cerebral Palsy- Orange County (UCP-OC) and the Down Syndrome Association (DSA) team up to put on our annual summer bike camp! This year, we will again be co-hosting this event at Soka University in Aliso Viejo. This camp is a weeklong camp that enables children with disabilities to learn how to ride a bike. Riding a bike is a huge freedom to have, and by teaching these kids to ride a bike will give them a feeling of independence. With the help of countless volunteers, these kids will gradually learn to ride a bike without training wheels. With the help of specially adapted bikes for the kids to start off riding, over the course of a week, they will end up being able to ride a normal bike. This is a great opportunity for your child to grow in their strength and balance as well. If you are interested in this special event, contact Janet Winter of UCP-OC (jwinter@ucp-oc.org). The deadline for registration is April 15th,  so act fast! We hope you decide to participate in this extraordinary event!

Written by: Elizabeth and Ellie, with story from Kathrina

Glimmer of Hope Gala: Post-Gala

Glitz and glamour is what awaited the attendees of this year’s Life Without Limits Gala on Saturday the 26th of March at Newport’s Balboa Bay Club. Children ambassadors to UCP-OC greeted each person with a smile and a wave as they arrived to the event, and then ushered them into the cocktail reception where they had a wine and silent auction. Guests were offered specialty “Wickedtinis” and hors d’oeurves as they waited to enter the Grand Ballroom for the dinner and live auction.

Once you entered the ballroom you were ushered into an elegant world of sparkling emerald and stunning candlelit trees, each place setting fully equipped with emerald glasses and playbill for the evening. The main course was a mouth watering filet mignon and garlic roasted prawns with the musical talents of 19 year old Marna Rough and Sage Hill High School sophomore, Caitlin Cohn to entertain.

The night also honored Julia and George Argyros for their years of steadfast support for children with disabilities. The Reverend John and Mrs. Anne Huffman shared stories of friendship and philanthropy prior to the award presentation, and the couple was joined by their children and grandkids. The event was supported by DLD Insurance Brokers Inc, The Argyros Family, The Dubia Family Foundation, Gibson, Dunn & Crutcher, LLP, The Tunney Foundation and Fish & Richardson.

A live auction included packages worthy of the King of Oz. There was a Montecito beach house, Top Gun Fighter experience, Grammy tickets, a trip to New York including a shopping spree at Bergdorf-Goodman, theater tickets and accommodations at the renowned Plaza Hotel (sold 4 times!), a complete Hawaiian vacation and a sports lovers dream weekend with Lakers tickets, golf and luxurious Bentley. The night raised a total of over $380,ooo for UCP-OC. Live entertainment by Liquid Blue ended the night on the dance floor.

Make sure not to miss out next year on this unforgettable night, as you wine and dine in style to support UCP-OC!

Please follow this link to look at the pictures from the event! http://lilystein.smugmug.com/CLIENT/UCP-Gala

written by: Elizabeth Wylie

Meet Your Bloggers!

Your bloggers have been hard at work discussing how to keep you involved in what is going on at UCP-OC!

We wanted to give you a chance to get to know who is writing so it can be a little more personal.

On the left is Katy, she has her own successful blog about being a teen with CP. She is a senior in High School and is in the thick of college decisions for next year. She is from Huntington Beach and loves to keep active by going for hikes and other activities. After you look around our blog you should visit hers!

http://www.teencerebralpalsy.com/

 On the right is Elizabeth, she is the Social Media/Marketing intern here at UCP-OC. She is a senior at Azusa Pacific University and is graduating this May! She is also from Huntington Beach and loves discovering new unique coffee shops and having fresh flowers in her apartment. She is passionate about working with and helping children, and hopes to someday center her career around that.

Ellie Bowers is a freshman at Northwood High School in Irvine, California. There, Ellie plays on both the Basketball and Lacrosse teams, and is involved in Freshman Class Council, as well as the FCA and Wolfpack clubs.  In her spare time, Ellie enjoys hanging out with friends, going to her church’s youth group, playing the piano, and spending time with her family. Ellie currently resides in North Irvine with her parents and two sisters.

This is Bridget, she is a new addition to our team and we look forward to hearing what she has to say! Bridget is a 14 year old 8th grader at Sierra Vista Middle school in Irvine. She likes to hang out with her friends, ride horses, and work with kids at the local elementary school and religious school. Bridget wants to be a teacher when she grows up.

Glimmer of Hope

Glimmer of Hope

A Night to Shine in the Emerald City


Come with us to the Emerald City for the Life Without Limits Gala, 2011! This is a dazzling night filled with food, dancing, and wonderful speakers—a night you won’t want to miss. This black tie event will take place on the 26th of March, at the Balboa Bay Club and Resort (1221 West Coast Highway, Newport Beach), starting at 5:30 p.m. We are hosting this event to raise money for our organization and to celebrate children.
We will be honoring the generous support of Julia and George Argyros. Mr. Argyros for their impact on children in Orange County. He is a former United States Ambassador to the Kingdom of Spain, has attained many highly acclaimed honors over his lifetime, including the Horatio Award for Distinguished Americans, the Ellis Island Medal of Honor, and the Semper Fidels Award from the Marine Scholarship Foundation. The Argyros Family Foundation is one of our sponsors for this extravagant event. Other sponsors include the Dubia Family Foundation, D.L.D. Insurance Brokers, the Tunney Foundation, Fish and Richardson, and Gibson, Dunn & Crutcher LLP.
So join us as we celebrate a night working towards our mission of helping children reach their potential! Everyone deserves a glimmer of hope, and you can help this by coming to the Life Without Limits Gala!

New in Assistive Technology

The Apple iPad…it’s as though the word is just lingering in the air today. Why is that you ask? The new iPad 2 comes out today! This means that there is a new iPad available, but you can also find the first iPad at a much more affordable price! The new iPad promotional video even features a lengthy portion to the unexpected use of the iPad by kids with special needs.

As full supporters of living a life without limits we continually look for ways that your children can communicate, learn and play effectively. Recently we have come across a couple applications that are innovative and that really work, and conveniently available on the iPad. Many special educators, speech pathologists and occupational therapists use these applications now and have seen positive results. These apps make communication fun and are great for kids with autism, down syndrome, cerebral palsy and other special needs.

We are really excited to tell you about these apps! First we would like to introduce you to the Proloquo2Go. This is a product from Assistive Ware that provides a full-featured communication solution for people who have difficulty  speaking. It has a text to speech feature that will allow your child to type or select an action when they have a hard time communicating their needs or wants. This is also a learning tool for young toddlers so that they can learn their shapes, colors and expand on their vocabulary! UCP-OC has recently, through a Bellows Grant, provided 3 year-old Gabe with an iPad and Proloquo2Go application and his mother says, “He has blossomed with his speech production, and is now imitating words constantly and recognizes shapes, colors and the alphabet…Not only has the iPad improved his speech production, it has been a tool to help him learn and share with the rest of the world all he knows, even with limited speech abilities.”

You can find more information at http://www.proloquo2go.com/About/article/what-is-proloquo2go this app is available on the iPad, iPhone and iTouch and is $189.

The second application we want to tell you about is called Tap to Talk and is similarly offered on Apple products as well as the Android, Nintendo DS and PCs. It is a yearly subscription for $99.95 and they offer a 30 day no questions asked trial. The program originates on your computer and the apps for your mobile devices come free. On this app your child has 2,500 pictures to choose from so he/she can organize and make their own albums. The text to speech option allows your child to speak to you, or allows you to record your own voice to different pictures to stimulate memory for your child.

For more information go to http://www.taptotalk.com/

Of course before making a purchase look at reviews online and try it out! These applications give children the opportunity to learn and share with the rest of the world despite their limited communication abilities. Allowing them to be independent…truly living life without limits!

written by: Elizabeth Wylie

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