The 16th Family Conference on Cerebral Palsy and Developmental
Disabilities was a roaring success. Held October 24th and 25th
in Portland, nearly 150 parents, self-advocates, vendors, presenters,
and staff came together for two days of speakers, workshops, and
connections. The vendors were “generous with their time” and a
Our keynote speaker; Julie Keon shared “Ten Pearls of Wisdom
Gained in Ten Years” with the group. One mom wrote “it was a great
opening topic…allowed me to connect, feel accepted, and that I was
among friends who share my struggle.” Another said that Julie’s words
went “straight to my heart.”
In addition, there were 14 workshops on such topics as
Low & High Tech Communication; Adaptive Play/Recreation;
Custom Orthotics; K Plan; Treatments for CP; Sibling Support; and
the usuals: Parents Panel; Growing Up with CP.
Here are some remarks from Julie’s afternoon workshop on
“how to stay resilient for the long haul”: “we have to make self-care
a priority, without making it an added stress”; “it takes a metropolis
to raise a child with medical fragility”; “we take 28,000 breaths a day;
if shallow, our body thinks we’re in an emergency”. She really focused
on the importance of deep breathing.
The Family Support Conference is held bi-annually (every other year).
Plans are already underway for our October 2016 conference.
If you missed this year’s, you want to be sure to attend the next one.
This year we will be celebrating 10 years of the Walk, Roll 'n' Run! We are excitedly planning for this momentous day and hope you can join us!
It is always a wonderful day spent with family, friends and the community as we raise awareness and the funds needed for the Family Support Department here at UCP.
Register at www.walkrollnrun.org to sign up, form a team, join a team or support an individual! We have a big goal of $100,000 to meet for our 10th year and every bit helps!
We are always looking for wonderful sponsors, to help to make this fun and meaningful day in the community special for all. If you know of a business that would like to join our list of sponsors and help us reach our fundraising goal, have them view the sponsor packet by clicking here or email Kerry Pinney, Development Coordinater at for more information.
Watch the new video to see the fun had by all over the last 9 years and don’t be left out of the fun as we celebrate 10 years of the Walk, Roll ‘n’ Run!
Want To Find Out More?
This year we are asking for YOU to design the 2014 Walk, Roll 'n' Run t-shirt! See complete details for the t-shirt design contest by clicking on the pdf below. There is a $100 gift certificate in it for the winner along with the joy of seeing your design on hundreds of people around town!
Submissions Due - Friday, March 14th!
UCP’s Family Support Department provides all kinds of support to parents who are raising a child with cerebral palsy (and rare disabilities that mimic CP), such as information and referral, support groups, and overnight respite from caregiving.
But one of the most important things we do is help parents connect with other parents. One of the ways parents connect is through our “Let’s Connect” program, which UCP runs with funding assistance from the Developmental Disability Service offices in Clackamas and Multnomah counties.
Here’s how Let’s Connect works: throughout the year, parents can attend trainings on a variety of useful topics. Attendees will learn a lot, and get the chance to connect with other parents who are interested in the same topic.
If you missed the 2013 trainings, we have good news for you! In 2014, we will once again be hosting a full roster of trainings in Clackamas County. We are collecting suggestions for training topics from county service coordinators and parents. If you’d like to suggest topics for the trainings, please contact us by .
Along with the trainings, the 2014 Let’s Connect program will also feature several family outings, including the extremely popular roller skating day and a summer picnic. Stay tuned to learn more details!
Meal time a challenge?
UCP will be holding a workshop which will explore the nature of picky eating for children, teens, and adults who experience disabilities. The nationally known speaker, Joan Medlen, will share strategies and a tiny bit of science to reduce stress at mealtime. The training will be held November 7th from 6:30pm to 8:00pm in Clackamas. Learn more here.
This training is the last training of 2013’s Let’s Connect Series. Let’s Connect is a vibrant collaboration between UCP Family Support and the Clackamas and Multnomah Developmental Disability Service offices, and combines trainings, outings and the sharing of useful information.
Find out more about UCP's Family Support Department here.
With state resources dwindling for families, it’s more important than ever that parents and other caregivers have opportunities to connect to share resources, respite, equipment, emotional support, and more.
To facilitate these connections, UCP Family Support is offering something we call “Let’s Connect.”
Let’s Connect is a vibrant collaboration between UCP Family Support and the Developmental Disability Service offices in both Clackamas and Multnomah Counties, who have provided grant money to fund the trainings.
This year, we will be holding seven parent trainings for parents and other caregivers (as well as professionals) on topics that have been identified by families as relevant to them. The topics include:
The trainings will be held between March 7th and June 12th. To find the dates and locations of these trainings, please visit this link.
Last year, we worked with Clackamas County to provide nine parent and professional trainings; the trainings were very well attended. This is a partnership we hope will continue for years to come.
Along with the trainings, UCP will also host two family outings in the summer that are fun for the whole family, including another roller skating outing with the Rose City Rollers! Summer can be a very stressful time for families raising children who experience a disability or special health need because not all summer programs are accessible.
Find out more about UCP's Family Support Department here.
Do you own a restaurant? Do you have connections to an Oregon or SW Washington entertainment venue, like a theater, comedy club, bowling alley, pool hall, or river cruise? Then we need your help!
United Cerebral Palsy's Family Support Department offers fun evenings out to parents who are raising children with disabilities. The program is called “Date Night”, and it’s wildly popular. But to keep it running, we rely on donated gift certificates from Oregon businesses. If you can help, please contact the program’s coordinator, Jan Shellenberger.
You’ll make a huge difference in the life of the parents, as this quote shows: "You have no idea how much it means to us. Rebuilding our marriage has taken a back seat to the needs of our children. From the bottom of our heart . . . THANK YOU!"
Date Night is only two years old, but we’ve been running an equally popular “Respitality” Overnight Program for twenty-one years. Parents who make use of this program receive a free hotel room for the night and the chance to and spend quality time together. If you’re able to donate a hotel stay, please contact .
View a list of participating businesses here and feel free to thank them for their support next time you visit them!
UCP’s Family Support Department currently supports over 800 families of children who experience cerebral palsy, or a closely-related disability.
The parents in the program have a very active Facebook page. Recently, a parent posted this question: How affected will my son be in the future?
The comments that were posted in response were so helpful that we have collected them into one document, which you can view here.
What a great 15th UCP Family Conference! Participants reported feeling a sense of connection and community, and said that they learned a great deal as well.
Our keynote speaker, Gregg Mozgala, set the tone for "community". If you have yet to learn about Gregg Mozgala and his work with Tamar Rogoff, watch the Today Show story here.
During their work together, Gregg and Tamar shot over 300 hours of film, and then obtained funding through Kickstarter to turn the footage into a movie. We were fortunate that Gregg was able to bring a rough cut of the movie to the conference, which we showed on Friday night.
The conference also featured 15 workshops with interesting and informative topics, such as spasticity management, healthy sexuality, blended diets, employment, transition to adulthood, music therapy, and much, much more.
What does “community” mean? And where do you find it? These were some of the questions posed by Gregg Mozgala, the keynote speaker at our 15th UCP Family Conference, which was held on November 2nd in Portland.
As someone who has been fully included throughout his life, Gregg pondered where he would find the “disabled community” of which he is ostensibly a part. He found it within the conference setting, where parents, self-advocates and professionals came together for two days to connect, learn and be inspired.
Gregg started a production company a few months ago dedicated to “producing full-length plays about the disabled experience” in New York City, where he lives. The name of the company, The Apothetae, was also the name of a place in ancient Greece where children born with disabilities or deformities were left to die – left to be exposed to the elements. Gregg chose this name for his company with the intention of exposing the world to the experiences of the disabled.
Want to find out more about Gregg and his vision? Visit the "NEWS" section of Gregg’s website here, where you can read a story about community that he did not have time to share at the conference.
At the conference, Gregg and the other participants were able to make new connections and find hope and possibilities for the future. Now that the conference is over, you can still make connections through parent support groups, family outings, and email and Facebook exchanges. Find out more about UCP's family support services here.
What does community mean to you and your family? Let’s keep talking…