United Cerebral Palsy of Orange County Therapists Participate in Cortical Visual Impairment Training

United Cerebral Palsy of Orange County Therapists Participate in Cortical Visual Impairment Training

Led by: Dr. Christine Roman-Lantzy

Dr. Jennifer Simpson, UCP-OC CEO Cathleen Collins and Dr. Christine Roman-Lantzy
Dr. Jennifer Simpson, UCP-OC CEO Cathleen Collins and Dr. Christine Roman-Lantzy

The therapy team at United Cerebral Palsy of Orange County (UCP-OC) made a clinical educational leap forward with significant support from Abbott Medical Optics by participating in a unique therapeutic training for Cortical Visual Impairment. The training led by the renowned Dr. Christine Roman-Lantz prepared UCP-OC therapists for the launch of United Cerebral Palsy of Orange County’s collaborative research initiative with the Gavin Herbert Eye Institute at UC Irvine. The project led in part by Principle Investigator Dr. Jennifer Simpson to better understand, serve and care for children with or at risk for Cortical Visual Impairment (CVI) associated with cerebral palsy. CVI “visual impairment that occurs because of brain damage…[visual impairment] exists not in the structures of the eye or optic nerve, but in the visual processing centers and visual pathways of the brain.” [1]

The training followed Dr. Christine Roman-Lantzy’s presentation of the topic to CHOC Children’s physicians and nurses at CHOC’s Grand Rounds the day prior.

UCP-OC Therapy Team with Dr. Christine Roman-Lantzy
UCP-OC Therapy Team with Dr. Christine Roman-Lantzy

Dr. Roman-Lantzy is the Director of The Pediatric View Program at The Western Pennsylvania Hospital in Pittsburgh, PA and serves as Project Leader of the CVI Project at The American Printing House for the Blind in Louisville, KY. Dr. Christine Roman-Lantzy serves at Project Consultant/Trainer to two five-year multi-state CVI-mentor training projects. She has lectured extensively around the world regarding the CVI educational materials she has developed.  

Dr. Jennifer Simpson is Associate Professor, Ophthalmology School of Medicine at UC Irvine and a pediatric ophthalmologist at the Gavin Herbert Eye Institute.

From Left to Right: Scott Pievac, Jim Corbett, Cathleen Collins, Steve Chesterman, Dana Dowers and Dr. Jennifer Simpson
From Left to Right: Scott Pievac, Jim Corbett, Cathleen Collins, Steve Chesterman, Dana Dowers and Dr. Jennifer Simpson

A group of United Cerebral Palsy of Orange County advocates joined Dr. Christine Roman-Lantzy at a luncheon hosted by Dr. Jennifer Simpson to learn more about CVI and how to support this-first of its kind on the West Coast-research project. The UCP-OC Cortical Visual Impairment Early Intervention Program anticipated Spring 2013 will improve the diagnosis and rehabilitation of infants at risk for vision complications associated with cerebral palsy as well as premature infants at risk for CVI and decreased central vision resulting from prematurity.


[1] Roman-Lantzy, Christine. Cortical Visual Impairment: An Approach to Assessment and Intervention. New York: AFB, 2007. 5. Print.

Surprising Gifts

We have had some very fun and exciting gifts that have involved our children in the past few months that we wanted to share with everyone!

  1. Wyatt’s Birthday Party: For Wyatt’s 5th birthday in lieu of presents, his parents asked that guests bring in donations for UCP-OC and the Shea Center both of which are organizations that have made a difference in Wyatt’s life. Wyatt’s birthday party was Angry Birds theme, and his mother designed a box for the donations to be placed in. When Wyatt presented the gifts to UCP-OC he said, ““I want to share my birthday presents to help other kids like you…[then corrected himself and said] like me.” Is your heart melting? Ours definitely are! 
  2. Wedding: This past September we celebrated the marriage of one of our children’s parents. They very humbly told their guests that they were not in need of presents, but that UCP-OC and CHOC have played a vital role in their child’s life. Similarly to Wyatt, they requested that their guests in lieu of presents make a donation to UCP-OC. This has spread the word about UCP-OC and how it is impacting lives throughout Orange County. We were so honored to receive these generous gifts.
  3. Citizens Business Bank Golf Tournament: Abby welcomed a visit from Citizens Business Bank today with a donation of $5,000 from their golf tournament benefitting UCP-OC and other OC charities.–Abby’s mother is alsostarting a UCP-OC Parent Committee to assist with planning for our Gala in May. If you would like more information on the committee please contact Elizabeth Wylie ewylie@ucp-oc.org.
    Pictured: UCP-OC CEO Cathleen Collins, Arthur Bergmann and Abby

     

  4. Family Gifts: Liam and Gianna had a few gifts to deliver to UCP-OC from family friends and then a matching gift from their grandparents! Thank you Liam, Gianna, and your family for supporting and believing in UCP-OC. If you would like to read Liam’s Child of the Month post please click here.

Ralphs Rewards

IT’S TIME TO RE-ENROLL!

–Ralphs Rewards: UCP-OC

 It’s time to re-enroll for Ralphs Rewards! Starting September 1st you can go onto www.ralphs.com and re-enroll or sign-up for the first time!
When you shop at Ralphs and use your Rewards Card a percentage of your total will go towards UCP-OC. All you have to do is sign-up online, register your card, use it at check-out, and Ralphs will do the rest (instructions below).
If you have any dificulties please don’t hesitate to ask for assistance. Please spread the word to families and friends, and let’s start raising money for UCP-OC!

  • Go to www.ralphs.com or http://www.ralphs.com/myralphs/703/Pages/community_contribution.aspx
  • Sign into your Ralphs Rewards, many of you will need to create an account.
  • If you need to create an account please check your e-mail to verify the account.
  • After verification you can log-in and proceed.
  • When you are logged in, underneath where it says “Welcome back” click “My Ralphs
  • On the left hand side click “Community Contribution
  • Under “Participant” click “Enroll
  • This should take you to another page where you can type in“United Cerebral Palsy of Orange County” and hit search
  • Select our “United Cerebral Palsy of Orange County” and hit save!

Thank you,
Elizabeth Wylie
949.333.6412
ewylie@ucp-oc.org

My Child Without Limits- September

Celebrating Siblings and 30 Years of Sibling Support

Having a child with a disability can present all sorts of challenges for members of your family including their siblings. The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental or mental health concerns. Their mission is to increase the peer support and information opportunities for brothers and sisters of people with special needs and to increase parents’ and providers’ understanding of sibling issues. This is accomplished by hosting workshops, listservs and websites for young and adult siblings, parents and providers.    
 
One key program of the Sibling Support Project are Sibshops- workshops that target young siblings of individuals with special needs. Sibshops are a spirited mix of games (designed to be unique, off-beat and appealing to a wide ability range), new friends and discussion activities. Sibshops acknowledge that being the brother or sister of a person with special needs is for some a good thing, others a not-so-good thing, and for many, somewhere in-between. They reflect a belief that brothers and sisters have much to offer one another – if they are given the opportunity.
 
This September, Sibshops are celebrating 30 years of service to young brothers and sisters across the globe. With almost 400 Sibshops in almost every state and in countries from Iceland to Argentina and Ireland to Japan, there’s much to celebrate! Find a Sibshop near you.
 
For more information about the Sibling Support Project check out their website.

A Focus on Oral Health

To achieve and maintain good oral health, children with disabilities often require a special approach to dental care. The National Institute of Dental and Craniofacial Research (NIDCR) has created a guide for caregivers that explains home-based oral hygiene for their family member with special needs. The guide provides a three step model to a healthy mouth and tips for preparing for your next a dental visit. Check out Dental Care Every Day: A Caregiver’s Guide.
 
The NIDCR has also developed a series of publications, Practical Oral Care for People With Developmental Disabilities, that equips dental professionals with the basic information they need to deliver quality oral health care to people with special needs. The publications present an overview of physical, mental and behavioral challenges common in patients with autism, Down syndrome, cerebral palsy and intellectual disability and offer strategies for providing oral care.
 
With the right information and some adaptation everyone can have a healthy smile!

Submit Your Ideas to Change the World for People with Cerebral Palsy

Last week World Cerebral Palsy Day kicked off the “Change My World in 1 Minute” campaign where individuals with CP, their family and friends suggest what they need to make their life more independent and rewarding. Do you have ideas to submit?    
 
Ideas are posted on the World CP Day website and everyone is encouraged to review the ideas and vote for the concepts that will have the greatest impact on people’s lives. At the end of September the top ideas will be made a reality. Submit your ideas and vote today!

World Cerebral Palsy Day!

 

At long last, the countdown is over, and the day has finally arrived. Today we celebrate the first-ever World Cerebral Palsy Day and the kick-off of the World CP Challenge! These global campaigns are meant to serve as a catalyst for innovative change for the 17 million people living with CP across the globe.
 
“The World CP Challenge and World CP Day provide a great way for people around the world to step up, get involved, and support the approximately 57 million Americans living with cerebral palsy and other disabilities, as well as the estimated 650 million individuals worldwide. By committing to just one month of activities, people can make a lasting difference for those living with and impacted by CP and other disabilities,” said Stephen Bennett, President & CEO of UCP. “I challenge everyone to take part and walk, step, or roll their way to supporting people with cerebral palsy around the world.”

So, what’s in a day?

  • As we celebrate World CP Day, head over to worldcpday.org and submit an idea you have on what would make the world a better place for those living with CP. Afterward, be sure to vote for your favorite submissions. Ideas and voting will be open through September 30. In October a panel will review the most popular submissions and select a number of them to put forth in a global campaign, seeking inventors to make them a reality!
  • Have a Facebook page or blog? Use one of our World CP Day avatars as your profile image.
  • For those participating in the World CP Challenge, don’t forget to clip on your pedometers and log your daily activity! Looking to step off on the right ‘foot’ and celebrate World CP Day? The proceeds you help fundraise will go toward vital services and groundbreaking research to help people with CP.  So spread the word; let everyone know about the virtual mountain you’re climbing and why it’s so important to you and the people we serve. When you log in to the Challenge website, click over to the “Raise Funds” section and you’ll see an area to send a pre-written email and below that, a variety of posters to put up in your office.