Six mothers gathered for ten weeks to share and write about their lives, families, experiences and especially their journeys with their children who have cerebral palsy.
Their writings have been turned into a theater production. "Fierce Love" is authentic riveting, and inspiring. These mothers share their hopes, life truths, and admit their biggest fears in their messy, broken, and brilliantly beautiful lives.
Directed by Erica Terpening-Romeo and Heath Hyun Houghton
Facilitated by Heath Hyun Houghton and Erica Terpening-Romeo
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!
With a new program that just started at Fred Meyer, you can now link your Fred Meyer Rewards Card to United Cerebral Palsy of Oregon & SW Washington and start earning donations for UCP with each swipe!
It is easy to do and you still will be receiving your rewards like usual each month.
This is a separate donation that Fred Meyer has agreed to do for the charities of their customers choice!
So, visit www.fredmeyer.com/communityrewards today and get your card linked!
You can search for us by name or enter our non-profit #91421. Complete instructions can be found in the pdf below.
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.
The event will take place on September 8, 2012 along the beautiful Portland Eastbank Esplanade!
Join us for our biggest special event of the year. It will be a day of fun and fundraising for UCP's Family Support Department. Get those teams formed and have family and friends join you! We will again be having a wonderful lunch provided by Papa Murphy's and The Old Spaghetti Factory while we enjoy the marimba music of the Sellwood Middle School Marimba Band! The Rose City Roller's will be joining us again as well to roll along with us and Cruze from 105.1 The Buzz will be MC!
There are many ways to participate find out more here.
Visit the event website: here. Or contact Kerry Pinney, Development Coordinator, at 503-777-4166 x353 or by .
For those of you who missed it, below is the text from a presentation by local Canby High School student, Carleigh Dewald, made at our Family Support Department’s movie screening of "Including Samuel" on February 11, 2012.
Carleigh spoke about how inclusion has worked for her, her role in the world of wheelchair racing, and her involvement in the Pan American games. Carleigh is currently working hard with the goal of making the team for the 2012 Paralympic games, which will be held in London.
Hi there, my name is Carleigh. When Susan approached me about sharing my story, I was excited. And a little nervous about what to say so I thought I would start at the beginning.
I came into this world at a whopping 4 pounds 3 ounces. I wasn't diagnosed with CP until I reached about 9 months old. Just as Samuel's parents had worries about his future, I'm sure my parents had some of the same concerns.
To be honest, before I watched the trailer to the movie I wasn't sure what inclusion meant. I soon realized that I was fortunate to have a support group and school system that had inclusion in place for me. I didn't grow up secluded from the public or my peers. My parents, teachers, friends, and coaches all share a big part in my social growth and independence.
I actually enjoy public school. I have found lasting relationships, received a world class education, and felt the relief that comes from acceptance. My father tells me the story of how my kindergarten teacher put his mind at ease. He asked, “How are the other kids reacting to Carleigh?” Mrs. Ruwitch replied, “They are becoming better people because of her.”
Don't get me wrong, I am still the kid in the wheelchair to most. You see, people are initially recognized by appearance. Perhaps their hair color or their height. Wheels are simply easier to remember. But, if you have the courage to approach me and introduce yourself, you will soon get to know me as Carleigh.
To give you an idea of my high school experience, you should know that I am a Junior and hold a GPA of 3.85. I am currently enrolled in two college courses and a member of the National Honor Society. I even did a two year stint in the marching band, if you can believe that.
I started playing sports at a fairly young age. Challenger Baseball gave me some much needed confidence. About four years ago, I got involved in an organization called Oregon Disability Sports. ODS offers many different opportunities for athletes, young and old. I have enjoyed playing basketball on the weekends for the Portland Wheel Blazer's junior team. We are a young team and always looking for new recruits.
About that same time I also got involved with another organization out of Eugene called World Wheelchair Sports. As soon as Kevin Hansen fitted me for a racing wheelchair I was hooked. I started participating in eighth grade track. Coach Huggins, who happened to be my fourth grade teacher, welcomed me with a big smile. I'm sure he was more nervous than I was.
Now at the high school level I have made some big improvements with each new track season. Sure, I made a few rookie moves. Like that freshman year incident with the hurdle. As I was about to flip over I actually muttered the phrase, “ Oops, didn't see that one coming.” Coach still has fun with that one.
Last season while competing at the Oregon Relays, I pushed a personal best and broke the American Record for the women's 400 meter race in my classification.
This got the Olympic Committees attention. By the summer of 2011, I was on my way to compete at the Track and Field Nationals in Miramar Florida. While there, I met some amazing athletes and made some good friends.
Shortly after returning home, I received a call from the Olympic Committee. I had qualified to be a member of the 2011 Parapan American track and field team that would compete in Guadalajara Mexico in November.
In preparation for the Parapan games, I traveled to the Olympic Training Center in Chula Vista, California. After a couple of weeks of rigorous training I was ready for Parapan.
When it came to race day. I was ready. I had been down there for about a week. I was training in the morning and cheering my team on in the afternoon. It was my turn for glory. I would be racing against my two roommates and two other ladies from Canada. They were all in their mid- twenties and here I was just sixteen years old. I got off the line first. I had the lead for the first 100 meters. Near the end of the race my teammate, Kristen Messer passed me to win the gold. I finished second with a silver medal in my first international event. As you can imagine, I was surprised by my performance.
The Mexico event was one of the most amazing experiences of my life thus far. I met people from all over the world. While we spoke different languages, came from different cultures, and expressed ourselves differently, we were all Olympic athletes with one goal in mind. To simply do our best.
Looking back. I would have to give thanks to the Olympic Committee for making the athletes feel included in this International event. From the adapted housing to the awards podium, I felt proud to be part of our national team.
Well, now I have my sights set on the Paralympic Summer Games at London, England this coming September. To get an invitation to be on the London team, I will need to shave at least one second off my best time. I have been working out each day, eating right, and getting mentally prepared for achieving my goal. I recently got an invitation to compete in the BT World Cup at Manchester, England this coming May. I hope to do well there and secure my place on the London Team.
Last weekend, UCP’s Family Support Department hosted a free screening of the movie Including Samuel. This documentary was created by photojournalist Dan Habib, and is about the fight for "inclusion" experienced by his son, Samuel, who has cerebral palsy. More than 75 people attended the event, and told us that they found the presentation very moving.
Attendee Kris Haines found it particularly moving when Mr. Habib interviews some of Samuel’s classmates and discovers that they (in Kris' words) "understand the intrinsic normalcy of Samuel and his presence in the classroom far better than some adults". Kris also found it extremely interesting that the brief from the landmark case of Brown v. Board (which overturned the doctrine of “separate but equal") predicted that the next people who would be seeking civil rights would be people who experience disabilities.
After the movie, attendees enjoyed a short presentation by local Canby High School student, Carleigh Dewald. Carleigh spoke about how inclusion has worked for her, her role in the world of wheelchair racing, and her involvement in the Pan American games. Carleigh is currently working hard with the goal of making the team for the 2012 Paralympic games, which will be held in London.
So, thanks to everyone who participated! And thanks to local coffee shop, Papaccino’s, for donating free coffee, and to Trader Joe's for the free cookies and juice!
If you haven’t seen Including Samuel, you can find out more here.
Are you planning to attend UCP’s complimentary screening of the movie Including Samuel? It will be held Saturday, February 11th, from 2pm to 4pm, and is hosted by UCP's Family Support Department.
This 58-minute video is riveting, thought-provoking, and is changing the way people think about disability.
A discussion will follow for those interested and able to take part.
This event is open to the community, so share this with friends, family, educators and anyone else you might think of!
Find out more here.
We’ve been fortunate that every time we put on a Family Conference, we have an exciting Keynote to share with everyone. This year is no different. Gregg Mozgala will be the Keynote Speaker at the 2012 UCP Family Support Conference, which will be held November 2-3, 2012 at the Sheraton Portland Airport Hotel.
Gregg has cerebral palsy, and is an actor and writer. He's made national press recently because of his work with Tamar Rogoff, a dance choreographer. Tamar first saw him acting in a production of “Romeo & Juliet," Tamar wanted to work with him, even though she knew nothing about cerebral palsy.
Ten months later, Gregg’s posture and walking had changed, and Tamar put him in a 90 minute dance production. Learn about Gregg and Tamar’s work together and see a clip from the performance here.
While working with Tamar, Gregg felt his Achilles tendon for the first time. He also discovered that his old "pigeon toe" walk was now a thing of the past. His feet straightened and, today, he walks upright and straight.
Gregg and Tamar have raised funding to put the 300 hours of film of their work together into a movie for therapists, families, and adults to learn from their experiences.
All we’ve ever heard is that CP cannot be changed, but here we have a young man who experiences cerebral palsy, in his 30’s, whose body and gait have been changed through work with someone who knew nothing about CP.
We hope you will save the date and plan to join us.
Lots of great vendors will be joining us this year, including Baby & Me.
Baby & Me has been an event sponsor for the last three years, and have multiple resale shops in Southwest metro area. Over the past few months, Baby & Me has been raffling off all sort of exciting items, with all proceeds going to UCP.
Now it's your chance to win an item. When you visit their event booth, you can spin the wheel to attempt to win an exciting prize. You can also purchase a raffle ticket; prizes include a $600 EMFIT Movement Monitor that can detect seizures.
Want to support UCP, simply by eating out at a delicious brewpub? Then July 7th is your day!
Lompoc Brewing's Fifth Quadrant pub is hosting a UCP fundraiser all day. Ten percent of all food and drink sales will be donated to UCP.
The pub features delicious pub food in a warm, family-friendly atmosphere, and is located at 3901 N Williams Avenue. We'll see you there!
Can we provide even better supports and civil rights to the people we support? That was the main question we sought to answer at our Friends/Walk, Roll, ‘n’ Run Kick Off Breakfast. The event was held on April 28, 2011 at the Multnomah Athletic Club. Present were UCP Board members, staff, longtime and new friends, potential and current sponsors of the WRR, and families.
The theme of the event was “erasing the lines”. Executive Director Bud Thoune shared the story of how there once were literal lines dividing people with disabilities from each other and the world at large. In the 1970’s, when UCP was running a sheltered workshop, the federal government required that a line be drawn down the floor of the workshop to separate those with severe disabilities from those with fewer disabilities. Even though these literal lines are gone, there are still plenty of lines that we should erase, so that the people we support can lead even richer and more fulfilling lives.
Our emcee was Terry Porter, former Trailblazer and now TV personality. Terry shared stories the lines he personally had to erase to get where he is today.
Many audience members were moved to tears as two UCP families shared their own stories. Jimmy and Marcy Watts, and Carrie Swisher, described how crushing it was to receive a diagnosis of cerebral palsy for their newborn child, and what a relief it was to discover all that UCP’s Family Support Department had to offer.
Kimberli Zonker, a manager at Whole Foods Market, shared the story of working with Phillip Klover, a person supported by UCP’s Supported Employment department.
Joy Gibson got everyone excited about this year’s Walk, Roll ‘n’ Run, which will be held September 10th. And UCP’s Michael Barron shared a brand new video about the Walk. See the video here—but be warned, you might be moved to tears, too!
The event was a huge success, raising $6,000. Six attendees expressed interest in creating a team for this year’s Walk; others expressed interest in sponsoring the Walk, and several attendees decided that they might be interested in volunteering or joining a Board committee.
“Events like this take a lot of time to prepare for”, said Bud Thoune, Executive Director, “but they help us educate our community about our mission and the needs of people with disabilities.”
Thanks especially to UCP's Kerry Pinney, Susan Cushman, Corrie Hausman, Jennifer Gwin, and Mike Barron for their intense preparations to put this event together.
Now the work really begins, as we follow up on the interest shown by this group of new and old friends, and get ready for the Walk, Roll ‘n’ Run. We hope to see you there!