Life Without Limits for children with disabilities Connections | FALL 2011
To help children with disabilities reach their full potential, improve the quality of life for their families, and foster an attitude of acceptance and inclusion.
A Right Fit for the Bedekar Family Rohan, our second son, was a surprise from the day he was born. He has blond hair, really light skin and grayish blue eyes. Not many Asian Indian kids are born that way! Over the next couple of years we found out why. Rohan was diagnosed with Angelman Syndrome, a rare neurological genetic condition, characterized by developmental delay, lack of speech, seizures, and walking & balance disorders. Despite his diagnosis, Rohan was a happy chubby baby, with endless curiosity.
A Life Without Limits for children with disabilities.
We first came into contact with United Cerebral Palsy of Orange County (UCP-OC), when Rohan was 4 years-old. Rohan needed an Inclusion Facilitator for his after-school program. UCP-OC did an assessment and matched him with one of their facilitators. We have contracted with them since. Once you find a place that is a “one-stop shop” why go anywhere else?
“UCP-OC’s sincere staff paved the path for our vision” At UCP-OC our Program Coordinator takes care of our needs so
• Results-oriented • Responsible stewards • Family-focused • Caring • Responsive
efficiently. This care and attention goes past the initial assessment. The Program Coordinator continually visits children in their after school programs to make sure things are going smoothly; if a change is needed she will switch facilitators until there is a perfect match. Not many organizations provide this follow-up care. An Indian proverb, roughly translated says, “Putting the right person in the right job is only as good as the follow-up you do to make sure it’s the right fit”. How true.
in this issue...
Rohan’s Inclusion Facilitator, Angella, is dedicated and deeply tuned into Rohan, in most cases, even better than I. She does a tremendous job of developing/nurturing Rohan’s interactions with other children in the facility. Today, Rohan gets invited to ‘typical’ kid’s birthday parties! That is the fruit of her efforts. Finding resources and activities for special needs children is difficult, unless you have a network of similar parents & support. UCP-OC serves as a connecting string, bringing the information and opportunity to us. They provide arts and recreation classes, education sessions/workshops, physical and occupational therapy. Our family takes advantage of the many extensive services UCP-OC offers. Rohan has attended
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Bedekar Family......................... An Update from our CEO........ A Day at the Beach ................. Donor Spotlight ........................ Bike Camp ................................ Gala 2011 ................................. Top Donors ............................... Golf 2011 ..................................
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An Update from our CEO For UCP-OC the summer months are a time of planning and anticipation for the coming year. It is also a time to reflect and celebrate our accomplishments. This past year is no exception. Through the dedicated efforts of our Board of Directors, Staff, Volunteers and Donors, we celebrated a banner year raising more than $1 million in donations in order to continue serving nearly 4,000 families in Orange County. As we evolve into a mission driven, philanthropic organization, support from the community is more important than ever. In the past, UCP-OC received nearly 90% of our budget from government sources. Today, government support comprises 50% of our overall funding needs. This issue is dedicated to our donors who have generously given to make a difference in the lives of our children and families. I hope you enjoy our special feature on Dr. Doris Tunney, one of our most steadfast advocates and supporters. I thank you for your involvement and hope that you will continue to stay actively engaged as we continue to grow as an organization. Please consider a donation to UCP-OC today so we can continue to provide the scope and quality of services that the children and families we serve depend upon every day. Your support helps to ensure a Life Without Limits for every child with disabilities! Cathleen A. Collins
Our Funding Donations from the Public
Medical Insurance & Private Pay
A Right Fit for the Bedekar Family (continued from front page) Saturday Club, where teens are paired one-on-one with kids, giving a much needed break for parents. We also utilize the respite services that UCP-OC provides. The Respite Coordinators make things so seamless and the parent e-mail network gives parents a wealth of information. I am amazed at the different dimensions of UCP-OC and the level of service they provide. UCP-OC has sincere, dedicated staff, who believe in the organization’s mission and vision. Our family is extremely appreciative of all the services UCP-OC provides. UCP of Orange County and their staff have been a tremendous support for our family and Rohan. Like any parent, our long-term vision for Rohan is to have friends and to be part of the community. Their sincere staff and childcare connection/inclusion facilitation pave the path for our vision. They truly stand behind their vision, Life Without Limits for children with disabilities. Sincerely, The Bedekar Family
A Day at the Beach
For the second consecutive year, UCP-OC was able to partner with Best Day Foundation and Down Syndrome Association of Orange County to bring a Beach Day to our children! Best Day Foundation helps children with special needs build confidence and self-esteem through safe and fun adventure activities like surfing, body boarding, and kayaking. The weekend of April 9th and 10th was no exception. They were beautiful days down at Doheny State Beach in Dana Point, where the children were given the opportunity to go out on the water in outriggers and kayaks and ride the waves on a surf board. UCP-OC had 39 participants, and one child and one smile in particular stood out. Ryan is a 13 year-old boy who receives respite services through UCPOC, and whose mother is part of our e-mail network that updates parents on exciting services and programs available to children with special needs. It has been a long road to get Ryan to Doheny Beach clad in his SpongeBob bathing suit. When he was just two days old, he had open heart surgery, and since then the count has risen to 44 surgeries. He has cerebral palsy and severe scoliosis, which required him to have metal rods fused to his spine. Ryan is a very social boy. He loves being around people and making them laugh. Today, Ryan uses an iPad to communicate; so people can understand what he wants or needs. At Doheny Beach, Ryan rode an outrigger and was able to participate in other fun activities with his peers. At the end of the day, amidst cheering, each child was given a medal and a bucket of prizes making them feel extraordinarily special. Ryan’s mother was touched and encouraged by the experience. She says, “he smiled the whole day. It was really awesome to see so many people help the kids do things that they wouldn’t normally get to experience.”
Donor Spotlight: Dr. Doris Tunney A Pediatrician’s Legacy Dr. Doris Tunney has been involved with United Cerebral Palsy of Orange County for more than 10 years. What began as a board position for her late husband, Frank, has turned into a way of life for Doris. Her passion for caring for children started young and progressed over the course of her 20 year career as a highly revered pediatrician in Newport Beach and Chairman of the Department of Pediatrics at Hoag Hospital. As a pediatrician, Doris got involved and became a part of another family’s life. She helped them through the difficult times-not only treating the child, but the family as well. The relationships she has built have had an incredible impact on her. The Tunneys moved to Sun Valley, Idaho, where they started a private family foundation in 2001, as a way to give back to the community. To date, The Tunney Foundation has given away half a million dollars in grants to organizations in California and Idaho. The mission of The Tunney Foundation
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is to advance the potential of children and fulfill their dreams. The Tunney Foundation targets the health, welfare and education of children. UCP-OC’s programs and services for the children of Orange County align with the mission of The Tunney Foundation, and in turn, The Tunney Foundation has gifted UCP-OC more than $130,000. In commemoration of Frank’s dedication and unwavering support of UCP-OC, a Legacy Wall at the Life Without Limits Pediatric Therapy Center was created upon his passing in 2003. Doris’s background and passion for children influences her to give to other children’s organizations other than UCP-OC. One that particularly touches her heart is Camp Rainbow Gold, a camp for children diagnosed with cancer. Although many of the Tunney Foundation’s resources have been focused in Idaho, Doris explains that she continues to give to UCP-OC due to its dedication and stamina. She is enthused to donate to UCPOC because of the under-served
population that it addresses. She says that children with special needs have been forgotten, even in medicine. These children need more assistance after they leave the doctor’s office and that is what UCP-OC provides. Giving back has become a part of what she does, not only to recognize her late husband, but to make sure UCP-OC is taken care of. She says “They are doing a great job with what I have donated in the past, and continue to impress me advancing in a stagnate economy. They have the engine within them to continue and not take no for an answer.” She concludes with saying that “everyone knows someone with a disability, and giving to this organization is an amazing gift that we all can have and we don’t even know it.”
Lose the Training Wheels For the fourth consecutive year UCP-OC, aligned with the Down Syndrome Association of Orange County, brought Bike Camp 2011 to 40 children. A week before camp started, one of the campers, Selah a bubbly 9 year-old with cerebral palsy, was gifted a new bike from employees at Edwards Lifesciences. Throughout the week Selah, and the other campers, learned gradually how to ride a bike independently. Specially adapted bikes developed by “Lose the Training Wheels,” are utilized to teach the children balance. Selah now loves to ride her bike! It was an incredible experience having the opportunity to watch these campers go from total dependence, to riding around the parking lot with their volunteer running behind them. Thursday the campers were able to bring in their own bikes, and Selah brought in her new bike to show off her skills. A special thank you to Soka University for donating their beautiful gym and to EastonBell Sports for so generously donating bicycle helmets to each of the participants.
Glimmer of Hope
Annual Life Without Limits Gala, 2011 A Night to Shine in the Emerald City
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. The night honored Julia and George Argyros for their years of steadfast support for children with disabilities. The former U.S. Ambassador and his wife, Julia, were given the IMPACT Award to recognize their unwavering generosity during deep budget cuts, that have greatly affected our UCP-OC. The Argyros family takes philanthropy seriously, and does everything with heart and soul. The couple influenced the gala’s theme of “Glimmer of Hope” by allowing our organization to fulfill the hopes of children and parents for a Life Without Limits! Other sponsors included DLD Insurance Brokers Inc., The Dubia Family Foundation, Gibson, Dunn & Crutcher, LLP, The Tunney Foundation, and Fish & Richardson. A live auction included glamorous unique experiences, some selling more than once! Live entertainment by Liquid Blue ended the night on the dance floor. In total, the night raised over $380,000 for UCP-OC. The theme of “Glimmer of Hope” was present in the invitations adorned with emeralds and each place setting fully equipped with emerald glasses and Playbill for the evening. Children Ambassadors of UCP-OC greeted each person with a smile and a wave as they arrived to the event, and ushered guests into the cocktail reception and silent auction. Guests then entered the Emerald City and were transported into an enchanting world of sparkling emerald and stunning candlelit trees. The main course was a mouth watering filet mignon and garlic roasted prawns, with the musical talents of 19-year old Marna Rough, accompanied by Sage Hill High School sophomore, Caitlin Cohn, singing selections from the popular Broadway musical, Wicked. Save the date for this unforgettable night next year, as you wine and dine in style to support UCP-OC on April 28, 2012 at the Balboa Bay Club.
Life Without Limits AUTUMN Golf Classic
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M O N D AY, O C T O B E R 2 4 t h , 2 0 1 1 8AM
For more information contact Robin Walker email@example.com or 949.333.6401
UCP-OC is proud to recognize the following
from fiscal year 2011
For a complete list of our donors that have contributed to our organization in fiscal year 2011 visit www.ucp-oc.org
UCP-OC Board of Directors Richard Cohn, President Aitken, Aitken & Cohn Grant Beresford, Vice President Microsoft Corp. Samuel Gesten, Secretary Allergan, Inc. Thomas Quinn, Treasurer Allergan, Inc. Afshin Aminian, MD Adult & Pediatric Orthopaedic Specialists Mark Clemens KPMG Daniel Glassman St. Joseph Health System Gunnar Gooding Select Staffing John Harvey The Harvey Company Insurance Services
Did You Know.... 13 % of children 13-17 have a developmental disability.1 19% of Americans are classified as a person with disabilities which equals the poplulation of California and Florida combined.2
Giving up 1 specialty coffee a week for a year covers the cost for 3 months of Art Class so Olivia can learn to draw and make new friends. In August, Olivia was invited to her first birthday party with typical peers. One tank of gas is equivalent to providing a family with a special sitter. A special sitter allows mom and dad to have a worry free date night.
Kim Letch Ernst & Young Monty Mars Edward Lifesciences
Scott Pievac SPC Retail Display Group Bonner Paddock Young’s Market Co. Daniel Vittone VOIT Real Estate Services
UCP-OC Management Cathleen Collins, Chief Executive Officer Erin Ball, Senior Development Officer Kathleen McFarlin, Director of Programs & Therapy Services
+ Florida = 54,400,000 people
CP affects 1 out of 500 children born in the U.S. Making it more common than pediatric cancer.3
Michael Helmuth American Security Bank
Michele Maryott Gibson Dunn
1. Center for Disease Control and Prevention 2. U.S. Census Bureau 3. Dr. Roslyn Boyd, Scientific Director, Queensland Cerebral Palsy & Rehabilitation Research Center
We put faces to these statistics. Help us change the life of a child. Donate today!
Follow UCP-OC online! Facebook: Become a fan of UCP-OC on our Facebook page. Just login to Facebook and search for “United Cerebral Palsy of Orange County”
Robin Walker, Manager, Guilds & Events Kathleen Scatton, Finance Manager
UCP of Orange County 980 Roosevelt, Suite 100 Irvine, CA 92620
tel: (949) 333-6400 fax:(949) 333-6440 firstname.lastname@example.org www.ucp-oc.org
Twitter: Life is a stream of thoughts. You can find out our thoughts at @UCPOC
Our blog is a place you can go to learn about the new technology for children with disabilities, hear stories about children from UCP-OC, stay updated on events and so much more! Join the conversation! We want to get to know you and be in community with our families! Visit our blog and learn about the happenings at UCP-OC. http://ucpoc.wordpress.com Check out our YouTube channel! See videos from events and inspiring videos from families and children we serve.
Published on Oct 27, 2011
What's Inside: A Right Fit for the Bedekar Family An Update from our CEO A Day at the Beach Donor Spotlight Bike Camp Gala 2011 Top Donors G...