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You are viewing 28 posts with the tag family support

It's Roller Skating Time!

    • Roller Skating

Guess what is just a few days away!? UCP Family Skate Night with the Rose City Rollers at Oaks Park! Otherwise known as "UCP's Most fun Night of the Year!" Don't miss out. Join us on April 9th! See more here



UCP Goes Roller Skating

    • Skating

UCP went roller skating on October 10th. Kids and adults took to the floor using any combination of wheels--whether that was skates or wheelchairs. A good time was had by all.


Jeffrey's Life-Changing New Device

    • Jeffrey using his new stander

Last June, UCP had the pleasure of giving out almost $40,000 in “Family Grants” to UCP families who use our Family Support Department’s services. We were able to assist over 40 families, paying for all sorts of equipment and therapy services, including Upsees (a mobility device that lets children with motor impairment stand and walk with the help of an adult) , adaptive strollers, intensive therapy, communication devices, and more. We also paid for a stander for Jeffrey, which you’ll get to read about below, in the words of his family.

Thank you so much for the wonderful donation to help purchase Jeffrey's Easy Stander. He loves it so much!

The stander has wonderful wheeled mobility which has enabled him to be easily moved throughout the house to participate in all kinds of activities in a standing position. His favorite is cooking! You can find him in the kitchen every evening helping with dinner.

He also enjoys using his computer a lot more because the standing table surface is large enough to accommodate his computer and mouse pad! 

It's been a lot of fun for all of us.

I haven't mentioned to him that the purpose of a stander is to prevent hip surgery by keeping the hip socket formed correctly with correct and consistent weight bearing. Wonderful!!!!

We sincerely appreciate United Cerebral Palsy's donation. It has greatly improved our son's "happy meter," which in turn improves our family life and the village surrounding Jeffrey.

We are blessed to be part of such a wonderful organization. All the people we have ever encountered associated with UCP have been wonderful, helpful, caring people. We love YOU!

Sincerely yours,

Jeffrey, Ron and Cheryl Hugie

 


Own 'Fierce Love' the play on DVD!!!

You've seen the play - now you can own it on DVD!!

Six UCP moms 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 and brilliantly beautiful lives.

Now you can own the full theater performance on DVD!!!

CLICK HERE TO PURCHASE YOUR COPY TODAY!!!


Fierce Love Revival with United Cerebral Palsy

Fierce Love, in partnership with United Cerebral Palsy was an enormous success. Audiences filled Milagro and spoke highly of the journey the smart, funny writers took them on.

As a special event during United Cerebral Palsy’s Family Weekend, Well Arts is bringing back the sold out hit, Fierce Love, for two performances on Sunday, August 16th. UCP’s Family Picnic takes place at Harper’s Playground, Portland’s first ADA accessible playground, on Saturday, August 15th.

On Sunday, Well Arts will present a matinee (2:00) and evening (7:30) performance of Fierce Love, the extremely moving play written by six mothers of children with cerebral palsy.

Between the two performances there will be a meet and greet with the writers, cast, and production team; along with food, drink from local establishments and a silent auction with items from local businesses and hand-made by UCP members . All proceeds from ticket sales and the silent auction will go to benefit United Cerebral Palsy and Well Arts evenly.

Tickets for this special event are available now, and include the evening reception. General Admission is $30.00, $20.00 for UCP Members.

Reservations can be made by email at , or by calling the Well Arts Office at (503)459-4500. Tickets will go very fast, so reserve your space early!

Performances at Milagro Theatre, 525 SE Stark, on Sunday, August 16, 2015 at 2pm and 7:30pm.

 

Fierce Love

UCP Family Support Director Susan Cushman featured in Fierce Play! - REPEAT PERFORMANCES AUGUST 16, 2015 - ONE DAY ONLY!!!


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

click this link to read the Portland Tribune review of Fierce Love

click this link to read The Crippled Critic's review of Fierce Love

  • WHEN:
  • Sunday, August 16, 2:00pm & 7:30pm
  • WHERE: Milagro Theatre - 525 Southeast Stark Street, Portland, OR 97214 
  • COST: $30 general admission, $20 UCP Members 
  • TICKET INFORMATION: (503) 459-4500 or www.wellarts.org


 


The 2014 Family Support Conference was a Great Success!

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
“great resource.” 

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.

Feedback about the conference was very positive.  Here are some comments from attendees:

  • As a professional it was amazing to see how many families were attending.

  • It will impact me greatly. I always love to learn and really be a part of the CP community.

  • I made some great connections with the vendors.

  • Great resources in adaptations to play workshop.

  • We will keep in touch with new contacts for sure.

  • Increased sense of pride in the community; we obtained ideas to build on and apply for the future.

  • The opportunity our daughter had to be a presenter gave her a confidence boost that will help in all areas of hers and our lives.

  • I learn more about being a parent of a child/young adult with cerebral palsy each year I come.

  • Great opportunities to talk with people and connect with other parents with children with the same level of function.

  • I loved the support and openness of everyone. There was a great sense of community.


10th Annual Walk, Roll 'n' Run - September 6, 2014

Registration NOW Open!

10th Annual Walk, Roll ‘n’ Run
September 6, 2014


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?

Contact Kerry Pinney, Development Coordinator, at 503-777-4166 x353 or by .

 

T-shirt Design Contest for the 10th Anniversary of Walk, Roll 'n' Run

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!


Let's Connect in 2014

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!

 

For more information, please contact Susan Cushman at 503-777-4166 x332 or send an .


Let's Connect November Update

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.


Let's Connect

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:

  • Bullying Prevention
  • Behavior
  • Transition to Adulthood
  • Communication
  • Locating Summer Resources 

 

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.


Date Night With UCP

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!

 

    • Jimmy & Marcy on Respitality Date Night
    • Jimmy & Marcy on Respitality Date Night
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New Resource For Parents

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.



The 15th UCP Family Conference Was a Huge Success

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.

 


 


A Community for Everyone

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…


A Little Help From Some Friends

Over the past couple of months, we have been touched by the outreach we have received from individuals in the community.  We are always very appreciative of each and every donation , as every bit truly does count! We would like to take a moment to recognize two supporters who have really gone above and beyond.

Jeff Snell reached out to UCP as he was preparing to train for his second marathon, pushing his son Micah in a jogging stroller.  Micah is an adorable 2 year old who happens to have cerebral palsy.  Jeff and his wife Suzie decided that they would like to turn Jeff and Micah's training into a fundraiser for UCP.  In their words, "It's been a challenging first two years for Micah and we want to make sure that other kids get the same kind of support that has helped Micah do so well."  

Jeff and Suzie formed the website www.micahsmiles.org with the goal of raising $2620.00 ($10 for every mile in a marathon) for UCP.  As Jeff says, "I run because I can.  When I get tired, I remember those who can't run, what they would give to have this simple gift I take for granted, and I run harder for them.  I know they would do the same for me."  

On June 14th, Micah and Jeff completed the Vancouver Marathon and exceeded their fundraising goal!  Way to go Micah's Miles!

Another community member, Steven, called to inform us that he and his friend would be running in the Sherwood Mud Run, and would be collecting donations for UCP in honor of a friend's brother, Nicky, who had cerebral palsy and recently passed away. They wanted to support to Nicky's family and to honor his memory in a positive way.  We are pleased to report that "Team Nicky" raised $520 in donations. 

It really is heartwarming to see what community can do.  Thanks to everyone who has generously given in honor and support of others through UCP.


Walk Roll 'n' Run 2012

Registration is now open for the 8th Annual Walk Roll 'n' Run for UCP!


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 .


A Little Respite

Parents who are raising children with disabilities tell us their most important need is RESPITE - - a little time away from their daily responsibilities.

In response to their need, UCP provides an Overnight "Respitality" program. We offer a free night's stay in a hotel room to all eligible parents in our Family Support Program.  Rooms are generously donated by hotels, motels and inns around the state. UCP's Family Support Assistant, Jan Shellenberger, coordinates the program.  In 2011, she was able to secure 85 hotel rooms. Great job, Jan! Unfortunately, though, we aren't able to find hotel rooms in all areas, so if you would like to help, see the "CAN YOU HELP" section at the end of this page.  

We also offer the parents a small fund to cover part of the cost of childcare for that night.  However, most families are able to arrange for family or friends to watch their kids at no cost. 

Parents who feel that they can't be away for an entire night are offered our  "Date Night" program.  In this program, parents receive a gift certificate from a restaurant and/or gift certificates for fun activities like movies, theaters, etc.

Both programs make a world of difference, as you will see below.


Quotes From Parents

 

“Thank you for supporting the continuing blessing of the Respitality Program.  Our family has so appreciated the opportunity to have a relaxing, stress-free night away in beautiful hotels to focus on just our relationship and not to be just the mom or the dad.”—Jolie

 

“As parents of a special needs child we rarely get time to ourselves or have time just for each other, so Overnight Respitality and Date Nights mean a great deal to us. Our daughter’s needs are also financially straining and we know if it weren’t for UCP we could never afford a night away like we had at The Marriott Waterfront.”—Carly

 

“Our family is very grateful to you for the much needed wonderful night out.  Our son was anxious about our leaving him behind but, in the end he had a very good time too. We felt he was proud of himself for doing a good job without us.  Usually we take him with us either because of a lack of a companion for him or the cost of doing both. The gift card and caregiver allotment made for a real date!  Tommy O’s Restaurant was relaxing and full of Aloha spirit. We enjoyed the food so much and the service was outstanding!  We appreciate your generosity and thank you for including us in the Date Night Program.”  —Cheryl

 

 

CAN YOU HELP?

 

If you have a connection with a hotel, motel, restaurant, or fun activity site, please let us know! We are always looking for fun new venues anywhere in Oregon and SW Washington! Contact Jan at 503-777-4166, ext. 343 or by . Thank you for your help!

 

 

 


Running a Marathon For UCP

Micah is a young boy who experiences cerebral palsy. He's an amazing little guy who inspires everyone who meets him. Right now, he is working very hard in his therapy to learn how to sit and roll on his own. And this June, he will be participating (from the comfort of his stroller) in his second marathon. His dad will be running and pushing the the stroller.

As the pair train this spring, they have decided to try to raise money for United Cerebral Palsy of Oregon. As Micah's dad says, "It's been a challenging first two years for Micah and we want to make sure that other kids get the same kind of support that has helped Micah do so well." Their goal is to raise $2620.00 ($100 for each mile they will run in the marathon).

To follow Micah's journey, visit their Facebook page or their website. We hope you will be inspired to give and to get out there and run or walk too!