Life Without Limits for children with disabilities Connections | SPRING 2012
The Friday Night Club
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.
“UCP-OC opens their doors..and hearts to teens and young adults with special needs” Teenagers are a growing demographic of individuals with special needs in Orange County, and this past summer United Cerebral Palsy of Orange County joined forces with The Friday Night Club for Teens and Young Adults with Special Needs to better address a population frequently forgotten.
The Friday Night Club was envisioned by Newport Harbor High School sophomore, Natalie Cernius, to create a place and time for teens with special needs to come together, make friends, and have fun.
A Life Without Limits for children with disabilities.
Natalie’s vision was catalyzed when her older siblings left for college. As they left, her 17 year-old brother, Andrew, was left without his only friends. Andrew has autism, and has few social avenues in which to meet other teens with whom to connect. Natalie saw a need, and wanted to ensure that Andrew was not left alone when the day comes that she too leaves for school. Andrew needed a way to meet and get to know other teens.
The Friday Night Club is also a unique time for the typical teens that volunteer at the event, as they have created relationships with these teens and young adults having special needs.
• Results-oriented • Responsible stewards • Family-focused • Caring • Responsive
in this issue...
The Friday Night Club ................. 1 An Update from our CEO ........... 2 Clinical Education ....................... 2 Life Without Limits Gala 2012 ..... 3 Recent Events .............................4 Donor Spotlight ........................... 5 My Child Without Limits .............. 5 Exemplary Board Member ......... 6 OC Marathon .............................. 6
Kiana, a 14 year-old freshman with cerebral palsy, is much like any typical teen. She goes to high school and interacts with her peers. Her mother says Kiana always wanted her mother by her side, but since coming to The Friday Night Club she is requesting that her mom leave once she is dropped off. “This club has allowed my daughter, Kiana, to thrive in an environment with her peers without me. She has gained an independence that I never thought would happen.” –Hue Jackson Santiago, a 20 year-old with Down syndrome, frequents the Connect Four game table. His competitive side comes out as he beats everyone right and left, ending each game with a victory dance and a shout of glee. Tina is an 18 year-old who has been a regular, like Kiana, since the club’s inception in May. She enjoys her time spent at the UNO table and has shown that she is a very strategic thinker. Although she is quiet, she has begun to shine at these events; she even came dressed up as a butterfly at the Halloween party hosted at UCP-OC.
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(Story continued on Page 2)
An Update from our CEO
This issue of our semiannual newsletter focuses on the many valuable resources and services UCP-OC provides to educate and empower families and children challenged by special needs and help them live a Life Without Limits. Thank you to all of our donors who contributed to our annual holiday appeal. Your generous support raised $37,000 to support our multi-disciplinary therapy center. We are humbled by those who responded to Granden’s story with a gift. In case you missed it, you can still learn about Granden and how to help many more children like him by visiting: www.ucp-oc.org/getinvolved/granden. October kicked off our fundraising season with our Annual Life Without Limits Golf Tournament, chaired by Scott Pievac CEO of SPC Retail Display Group. February launched our Sea & Sky Guild and their inaugural, Classic Vegas Night chaired by Guild Founder and President, Linda Beresford. Both events were a tremendous success and fun for all that attended. Saturday, April 28th is our Life Without Limits Gala, and there is still time to purchase your tickets. We will be Honoring James V. Mazzo, President of Abbott Medical Optics at the stunning Balboa Bay Club. This issue’s donor spotlight features Dr. Jennifer Simpson, a founding member of our Pediatric Medical Advisory Board (PMAB) and Pediatric Ophthalmologist at The Gavin Herbert Eye Institute at UC Irvine. Dr. Simpson has been instrumental in helping UCP-OC establish new programs for children with CP. Thanks to Dr. Simpson we received the Chancellor’s Award in Clinical and Translational Science from UC Irvine for Outstanding Community Based Organization. We are blessed to have the support of Dr. Simpson and other physicians like her. Our goal for the remainder of this year remains focused on philanthropy. Our need for fundraising and private support to continue serving Orange County is critical. Please consider a gift to UCP-OC today to provide programs and services that nearly 4,000 families depend on every day. Your support helps to ensure a Life Without Limits for every child with disabilities!
Cathleen A. Collins
Clinical Education Part of UCP-OC’s mission is to create opportunities for parents and therapists to learn about innovative products and technology available to children with disabilities, yet frequently hard to access. During the first half of 2012 we are hosting various clinical education courses for local therapists and families focusing on treatments for children with cerebral palsy (CP). These include: Emerging Concepts in Pediatric Orthotic Management for Children with CP sponsored by Ultraflex Systems, Spasticity Management sponsored by Medtronic, and a course in early diagnosis and screening for cortical visual impairment including a grand rounds session at CHOC Children’s this summer sponsored by Abbott Medical Optics. January: Ultraflex Systems In January Mark DeHarde, President of Ultraflex Systems, presented on an adjustable dynamic brace. These braces are individually customized for each patient to focus on particular areas that need special care or stimulation. Three children were given braces and evaluated in front of an audience of 75 pediatric therapists.
“Kids that have CP are all different; no one physically presents the same. This brace allows each person to customize it to produce the best outcome and target specific areas to increase improvement for each child. Now with this brace he will be able to fine tune his gait.” – Molly, Brady’s mother May: Spasticity Management Conference sponsored by Medtronic Specialists from CHOC Children’s & UCP-OC in the areas of neurology, orthopedics physiatry, and physical therapy will discuss the latest treatments for spasticity, as well as spasticity management using the Intrathecal Baclofen Pump by Medtronic. August: Grand Rounds sponsored by Abbott Medical Optics On August 29th UCP-OC will host a Grand Rounds at CHOC Children’s Hospital. The focus of this presentation will be the early screening and rehabilitation of children at risk for cortical visual impairment (CVI), featuring the acclaimed Dr. Christine Roman-Lantzy and her CVI Range Rating Scale.
The Friday Night Club (continued from front page)
Although it may be overlooked at first glance, teens with special needs want to have fun and socialize just like everyone else. Together with the Cernius family, we hope to create a safe environment for teens to get together for games, movies, conversation and friendship just like typical teens. The Friday Night Club meets twice a month, once at UCPOC and once at the Cernius home.
If you would like to sponsor a night please fill out the enclosed card. UCP-OC needs assistance in covering maintenance fees totaling $300 for each night, so that these teens have a safe and comfortable place to belong. For more information please email Natalie at email@example.com
Donor Spotlight: Dr. Doris Tunney
2012 United Cerebral Palsy of Orange County
Life Without Limits Gala through the eyes
of a child
H O N O R I N G J A M E S V. M A Z Z O
President, Abbott Medical Optics
6 pmâ€˘Saturday, April 28, 2012 The Balboa Bay Club & Resort, Newport Beach 1221 West Coast Highway Newport Beach, California 92663
For sponsorship opportunities, please call Erin Ball at 949.333.6452 firstname.lastname@example.org For reservations or further information, please call Robin Walker at 949.333.6401 email@example.com
Honoree James V. Mazzo
This year we are pleased to be honoring James V. Mazzo, President of Abbott Medical Optics, for his leadership and support of our collaborative efforts to bring about the UCP-OC Cortical Vision Impairment Early Intervention Program in affiliation with The Gavin Herbert Eye Institute at UC Irvine. The Vision Program, opening later this year, is piloting a novel clinical research partnership - the only one of its kind on the West Coast - to improve the diagnosis and rehabilitation of infants at risk for vision complications associated with cerebral palsy as well as premature infants at risk for cortical visual impairment and decreased central vision resulting from prematurity.
A Very Special Thank You to our Without Limits Sponsor and all our participating corporate sponsors Visionary
The Bridenbecker Family
Julia & George Argyros / Argyros Family Foundation Inspire
Sea & Sky Classic Vegas The glamour of Vegas came to life on February 11th for the nearly 200 guests that came to the Crevier Classic Car Museum feeling lucky at the Sea & Sky Guild Classic Vegas event. Major League Baseball Hall of Famer Rod Carew and Angels Baseball Chairman Dennis Kuhl came to play a little “hard ball” as dealers at the poker tables, in addition to the casino gaming tables, silent and live auctions, dinner, cocktails. TeenCP and UCP-OC blogger Katy Fetters was joined by Board Member Bonner Paddock as both told their inspiring personal stories of living with CP and why they support UCP-OC, raising the crowd to a standing ovation. The night as a whole was a tremendous success and brought in more than $80,000 to benefit the Sea & Sky Guild Scholarship Therapy Fund for United Cerebral Palsy of Orange County. We are very grateful to have the creativity, leadership and dedication from Sea & Sky Guild President, Linda Beresford, and her team who all worked together to create a new, fun event for UCP-OC. Make sure to be in attendance for next year’s night of luck!
18th Annual Life Without Limits Autumn Golf Classic
October 24th marked the 17th Annual Life Without Limits Golf Tournament. More than 130 golfers came out to support UCP-OC, bringing in over $130,000, making the event a milestone success. Founding sponsor Dana Dowers, CEO of DLD Insurance Brokers Inc., started the tournament nearly 20 years ago and was this year’s returning Title Sponsor. The tournament was chaired by Scott Pievac, CEO of SPC Retail Display Group, who was an Eagle Sponsor. Scott combined his Brianna’s Cup golf fundraiser with the UCP-OC tournament three years ago in honor of his daughter with CP. Gibson Dunn & Crutcher also joined SPC Retail Display Group as an Eagle Sponsor. Other tournament sponsors included Sidley Austin LLP, Bryan and Mary Ann Bentrott, Dorsey Whitney, Ernst & Young, The John Harvey Company Insurance Services, Paul Hastings, KPMG, OM Foundation, PricewaterhouseCoopers, Select Staffing, Samuelsen, Gonzalez, Valenzuela & Brown, Tidalwave Finance, Voit Real Estate Services, WLA Investments and 1st Enterprise Bank. A Superformance Cobra was donated by Lance Stander and Hillbank Motor Corporation, Superformance and Shelby Distribution as a Holein-One prize. Auction items of the day included golf excursions to premier golf courses along the coast of Southern California, Lakers and Ducks packages, a getaway at Bing Crosby’s Palm Springs estate, hosting of a party for the Newport Beach Christmas Boat Parade and a one week’s stay in an ocean-front luxury condominium in Punta Mita, Mexico.
DONOR SPOTLIGHT - Dr. Jennifer Simpson Dr. Jennifer Simpson, a pediatric ophthalmologist at The Gavin Herbert Eye Institute at the University of Irvine, has been involved with United Cerebral Palsy of Orange County for the past two years. She first came in contact with UCP-OC through Cathy Collins, who asked her to join the Pediatric Medial Advisory Board (PMAB) in 2010 to share her ophthalmic expertise and passion for children with special needs. Dr. Simpson grew up seeing the positive impact that a doctor can have on both families and a community. Her late father was a pediatrician in a small town in Michigan and it was both his skills and his compassion for his young patients that served as the driving force for her to become a doctor that cares for children. “It was through my father’s pediatric practice that I saw first-hand how the health and well being of children were directly linked to the core strength of a community.”
Impact As a pediatric ophthalmologist, Dr. Simpson deals with many forms of treatable eye disease in resilient, healthy children. However, she also sees many patients with complex vision problems related to prematurity and cerebral palsy and it is these types of conditions that motivated her to collaborate with UCP-OC to work towards addressing unmet needs in childhood visual impairment. The Future Jennifer’s background and expertise led her to join the PMAB at UCP-OC, but it is her passion for addressing unmet needs for children with disabilities that led her to donate to UCP-OC. “I give to UCP-OC because it provides crucial early intervention services to children with disabilities, while also helping families navigate the highly complex healthcare system to maintain these services for their children. Without this kind of advocacy, access to early intervention is almost impossible to coordinate and maintain.” Along with the services UCP-OC provides, Jennifer appreciates UCP-OC’s strategic focus and leadership. “As a donor it is important to me that a non-profit aligns its services with its core mission. UCP-OC understands that and does not stray from its mission of a Life Without Limits for children with disabilities.”
6.6% of all births in Orange County are indicated to be low or very low birth weight.1
In 2009 In an effort to create resources and opportunities for parents, we have a website that is specifically for parents, addressing the many questions that arise having a special needs child. This website is available to help you understand the journey, plan for what comes next in the care for your child and be in community with others who have gone through this process before.
Mychildwithoutlimits.org allows you to narrow down information
by disability, therapies, special needs planning, new technology and different strategies to help your child succeed, thrive and ultimately live a Life Without Limits.
1,081 people were diagnosed with CP in Orange County.2
70% of these people had an additional diagnosis along with CP. 2
In 2009 there was a
in the number of children diagnosed with developmental disabilities.1
UCP-OC is meeting the needs of the children affected by these statistics.
1 The 17th Annual Report on the conditions of Children in Orange County 2011. 2 State of California Office os Statewide Health Planning & Development (OSHPD) 2009 Hospitalization Data.
Exemplary Board Member
UCP-OC Board of Directors Richard Cohn, President Aitken, Aitken & Cohn Grant Beresford, Vice President Microsoft Corp. Samuel Gesten, Secretary STAAR Surgical 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 Kim Letch Ernst & Young Matthew Maletta Allergan, Inc. Monty Mars Edward Lifesciences
Gunnar joined the Board of Directors in April of 2004, and served as president from 2005-2011. Gunnar says, “My 8 years on the UCP-OC board has given me the opportunity to see first-hand the incredible work done every day by the dedicated staff of professionals at UCP-OC.” Over the last eight years, Gunnar has seen many changes in the organization from leadership and strategic plans to budgetary concerns. As our state and federal governments have Gunnar, Cathleen Collins & Donor Dr. Doris Tunney faced mounting budgetary challenges, the funds allocated to UCPOC have been drastically cut. “It required us to restructure the way we run the organization. I am proud of the fact that today UCP-OC raises 32% of its funding through private sources, and I have learned that securing private donors is not easy but critical to UCP-OC’s survival. The bright shining faces of the children that receive therapy, take karate or dance classes at UCP-OC offers a constant reminder of the profound impact we are making on the lives of these children in our community, and the importance in continually contributing financially to make the dream of a Life Without Limits a reality.”
OC Marathon: Team Jake & Team UCP-OC Families January 8th, 2006 Steven Robert crossed the finish line of his first marathon with his son Jake in his arms. The very next morning, Jake passed away in his sleep. Since then, Team Jake has participated in the OC Marathon running in honor of Jake, and to raise awareness and much needed funds for UCP-OC . This year we are introducing a second team to the OC Marathon. Team UCP-OC Families will be running/walking alongside Team Jake. Every family has a story to tell, by joining Team UCP-OC Families you can have the opportunity to share your story and run in celebration of a loved one that has been impacted by UCP-OC.
Michele Maryott Gibson, Dunn & Crutcher
Saturday, May 6, 2012
Bonner Paddock Young’s Market Co.
Marathon . Half Marathon . 5K “March 11, 2010, our babies, Victoria and Damian were brought into this world much too early, much too small and very sick. They were born at only 27 weeks weighing only 2 lbs each.
Scott Pievac SPC Retail Display Group Michael Tenerelli Dorsey & Whitney, LLP
Now at almost two-years old, our babies are doing everything two year-olds should be. Thanks to the help of UCP of Orange County, our babies have reached all of the milestones that we were once told may never happen.
Daniel Vittone Voit Real Estate Services
On May 6th, 2012, we will be walking in the OC Marathon…. Not only in celebration of our miracle babies, but to help raise much needed awareness and funds for UCP of OC. They need our help in order to continue offering these great services to so many children in need in our community.
UCP-OC Management Cathleen Collins, Chief Executive Officer
So join Team UCP-OC Families and let’s help this wonderful place so many kids depend on.” - David & Miriam Daboub
Erin Ball, Senior Development Officer Kathleen McFarlin, Director of Programs Robin Walker, Manager, Guilds & Events
There are 3 ways you can get involved!
Celeste Graham, Therapy Business Manager
UCP County UCPof of Orange Orange County
980 Roosevelt, Suite 100 980 Roosevelt, Suite 100 Irvine, CA 92620 Irvine, CA 92620 tel: (949) 333-6400 tel: (949) 333-6400 fax:(949) fax: (949) 333-6440 333-6440 firstname.lastname@example.org email@example.com www.ucp-oc.org www.ucp-oc.org
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