Love of Hockey Bonds NHL Player, Boy with CP

Beyond the Offseason,” a show featuring athletes, teams and coaches who give back to their communities in the offseason, premieres this fall with a highly anticipated episode featuring a blossoming friendship between a popular NHL player and a boy with cerebral palsy. The full clip of this episode debuts on You Tube today, just in time to help raise awareness on World Cerebral Palsy Day.

Host Lisa Varga captures the story of Liam Traynor, a 12-year-old boy with CP and a life-long love of hockey. Lisa and her production team, with the help of Mike Balkin and Power Plate brought Liam a donated exercise machine and reunited him with his idol and friend, Philadelphia Flyers player Michael Del Zotto.

Their bond over hockey is obvious, as is Del Zotto’s genuine affection for the young boy. While many athletes give their time and money to help fans with disabilities and hardships, Del Zotto makes a special connection with Liam, exchanging phone numbers and staying in touch via texts. They even argue a little over a call in a hockey game on TV.

Beyond the Offseason is a show designed to shine a positive light on athletes who make a difference. The program was inspired by Lisa Varga’s brother Shane, who is a two-time cancer survivor. Miss Varga is a veteran actor, producer and host with film and TV credits such as Showtime’s Emmy-award winning series “Homeland”, NBC’s “Game Time: Tackling the Past” and “Marley and Me.”

For more, go to www.BeyondTheOffseason.com or follow Lisa and the show on Twitter: @TheLisaVarga, @TheOffseason1

 

There’s Nothing Typical about Tosh

Special thanks to United Cerebral Palsy of Orange County for sharing the story of Tosh and his family. UCP affiliates work on the front lines to help 178,000 families like Tosh’s every day. Your support of UCP goes a long way toward making an impact on communities like Orange County and others throughout the country. Tosh_Choc_3-19-12

Tosh’s birth was far from typical. He was delivered stillborn by emergency C-section after an amniotic fluid embolism took his mother’s life. Miraculously, doctors were able to resuscitate him, but little Tosh spent the first three weeks of his life in the NICU faced with a variety of health issues related to his traumatic birth, including a very high risk of cerebral palsy.

When Tosh was released from the hospital, his father Jody was referred to United Cerebral Palsy of Orange County immediately for early intervention therapy. Tosh received weekly therapy sessions at UCP-OC for a year and a half which focused on strengthening his body to sit, crawl, stand and eventually walk. Progress was slow at first, but through the dedication of his therapist and Jody’s Toshcommitment to his progress, Tosh recently “graduated” from the therapy program. He is now considered developmentally typical – walking, talking and functioning like this toddler peers do.

“Without UCP-OC, I have no doubt Tosh would have significant developmental delays today,” said Josh’s father Jody. “I am grateful every day for the care and treatment UCP-OC provided to our family.”

UCP affiliates like UCP-OC and dozens of others across the country and as far away as Canada and Australia provide top-quality care for children like Tosh. But they prove to be invaluable resources for parents like Jody as well. No husband and expectant father expects to mourn the death of his wife on the same day he celebrates the birth of his son. Add to that the challenges Tosh overcame for his own survival and you can understand what a difficult experience Jody faced. Jody says that “throughout the entire process, I always knew UCP-OC was my partner in caring for Tosh. UCP-OC was a home to use, and the staff a part of our family.”

Cadyn-Tosh-Jody

 

 

#HalloweenWithoutLimits Costume Contest for Kids with Disabilities

Superman Costume

Via Best Special Needs Costumes

United Cerebral Palsy (UCP) will host a social media contest this October to find the most inventive, creative and limitless costume for children (or adults) with disabilities. Halloween is all about the costumes, but for many children with disabilities it can be difficult to find an off-the-rack costume which will accommodate their assistive technology – such as wheelchairs, crutches and braces. Also, some children with disabilities, including autism and Down syndrome can have sensory processing issues that require a bit more creativity in choosing a costume that doesn’t irritate or upset. That’s why UCP is celebrating those children and parents who have made the extra effort to create incredible custom costumes so that every child has the opportunity to experience a #HalloweenWithoutLimits.

Kicking off October 6, UCP will be calling for photo submissions on our Facebook page and Twitter (@UCPNational) account until Thursday, October 30 at midnight EST. Submitters should post on our wall using the #HalloweenWithoutLimits hashtag. Feel free to tell us a little bit about who the costume was created for and why. Anyone can enter, multiple entries are allowed and costumes can be new or from previous Halloweens. However, they must have been created for or worn by a person with a disability – child or adult.

Throughout the month, we’ll encourage our 23,000+ fans and followers to vote for the most creative costume by “liking,” “commenting” on, “sharing,” “favoriting” and “retweeting” their favorite photos. Halloween Friday, October 31, we’ll announce the fan favorites – the top five online vote getters. Those winners will be featured in UCP’s next Full Spectrum e-newsletter on November 3. Also, in that issue of Full Spectrum, UCP will announce our staff pick for most creative costume. That winner will be invited to tell the story of their costume (and their family) in an upcoming guest post on the Voices of UCP blog and receive candy gift packages compliments of Hershey’s.

For some inspiration, check out UCP’s My Child Without Limits website for an article on Halloween costume ideas for the physically-challenged.

 

Hershey's, The Hershey Company

 

Who Cares About Ken Jennings? A Teachable Moment

Yesterday, former Jeopardy champion and aspiring TV host, Ken Jennings made a highly offensive comment on Twitter. Many of his 177,000+ followers reacted with harsh criticism and several media outlets soon picked up on the storm, reporting on his comment and the ensuing furor online.Ken Jennings Screenshot

So who really cares about Ken Jennings or what he said. He is, after all, a self-described “fixture of yesteryear.” We could jump on the bandwagon and bash Ken for being none-too-bright when it comes to sharing your private thoughts on such a public forum, especially if you’re trying to build a fan base to launch another 15 minutes of fame. We could point out all that is wrong with this statement, but that’s hardly necessary. Those 41 characters pretty much say everything you need to know (as does the fact that almost 23 hours hence, after plenty of criticism, he has not attempted to remove the post.)

But for organizations like UCP, which have spent the better part of 65 years advocating to give people with disabilities the opportunities they need to fully participate in their communities and in our society, this is a teachable moment.

The lesson here is that for all of our progress – greater accessibility to public places, innovations in technology to make day-to-day life easier, reducing discrimination in education, housing and the workplace, more and better public services and support – we really haven’t accomplished much if people with disabilities are still regarded as “less than” people without disabilities.

It is that attitude that is so evident in Mr. Jenning’s post. He’s telling the world that using a wheelchair somehow diminishes what he would consider an otherwise attractive person.

That is sad. But it’s not sad for us. It’s only sad for Mr. Jennings and others like him who have not yet understood that disability doesn’t mean diminished. If we can use this unfortunate moment to make people stop and think for a moment – and possibly check their own attitudes – then we have a truly teachable moment. Maybe Mr. Jennings has given us a gift and offered us some knowledge about the prejudices that still lurk under the surface.

I’ll take “Enlightenment” for $1000, Alex.

Austin’s Journey

The following is a guest post from Jenny Schmit, a physical therapist and researcher at Cincinnati Children’s Hospital Medical Center who works with a client named Austin. Read the story of Austin’s personal journey from frustration to celebration below:

“I work primarily with children who have Cerebral Palsy (CP).  Through work, I have had the privilege of meeting a young man named Austin.  Austin is 17 years old and lives in Batavia, Ohio.  Images of his brain suggest that he had a stroke when he was in utero.  He has hemiparetic CP.  Austin plays the computer and watches television.  He is a teenager and like lots of them, he spends an awful lot of time sitting still.   Austin

Although the damage to Austin’s brain will not get worse, his mobility and function can continue to deteriorate. Unwelcome changes to bone, muscle, and the cardiorespiratory system can occur over time when patients with disability aren’t proactive. One of Austin’s best defenses is also a hot topic in public health today. Research suggests that decreasing the amount of time we spend being sedentary, and increasing the amount of time we spend engaged in physical activity is critical for everyone, but especially for children with CP!

At a clinic visit in April of 2014, Austin felt frustrated. Physical fitness testing at school meant running a mile, and it didn’t go well.

He seemed to be compelled to do something about it. Austin set an admirable goal; he announced that he would like to run, in its entirety, a 5K race.  He scoured the internet for his just right challenge, signed up for the Panerathon, in Mason, Ohio, which raises money to fight hunger (probably because the race includes a giveaway of free Skechers). He named the team that would support him the CP Warriors.

He worked tirelessly over the summer.  He spent Mondays, Wednesdays, and Fridays with outpatient physical therapists at Cincinnati Children’s.  He strengthened legs. He grew better abdominal muscles than most of the healthcare professionals who treat him. He practiced coordinated activities like skipping and jumping.  He walked on a treadmill.  He did silly things, like moving rings from one cone to the next with his foot or kneeling on top of big therapy balls without holding on.  And he ran.  He ran around the Medical Offices Building and met the people who live in the neighborhood.  He ran up and down the big hill that the Hospital lives on and doctors and nurses clapped for him.  He ran in the August heat and sometimes in unexpected rain. Every weekend, he ran around the trail at Lunken Airfield, with a team of volunteers from the hospital and CP Clinic and people who believed in him.  He ran with a dog, and sometimes a donated iPod shuffle and Rodney Atkins.  He ran while he talked about zombies and how to beat Halo and fried pickles.  He never ran without smiling.  His Mom filled a scrapbook with photos because while he ran, she and her husband filled up with pride.

Two things happened during this journey.

One is that Austin grew.  He threw up during a mile run in physical education class.  On Sunday, September 21, he will finish the 5K faster than many individuals without physical disability.

The other is that the people around him grew.  We thank him for his inability to perceive hurdles.  We thank him for reminding us that few things are out of the realm of possibility.  And we thank him for reminding us to carry ourselves forward (unless we are practicing walking backwards).

Please share his story.

If you live near Mason, Ohio, please come to applaud him at his finish line this Sunday.

And for heaven’s sake, can someone please make sure he gets a pair of size  9 shoes?!”

 

UPDATE: Austin completed his run! Watch updated news coverage here.

New Film Features Comedian with Cerebral Palsy

A new film released on Friday features Josh Blue, a stand up comedian with cerebral palsy known for winning NBC’s Last Comic Standing competition in 2006 and subsequent comedy specials on Comedy Central and Ron White’s Salute to the Troops on CMT. Dat Phan, who also competed to be a Last Comic Standing also stars.Josh Blue

“108 Stitches” follows a baseball team with one of the longest losing streaks in college history as they come to the realization that the school, led by the corrupt and unethical President of the University, has plans to disband the entire program.  Hilarity ensues as the misfits have just one afternoon to execute a plan to fill the stadium, sign the top recruit on the planet, and help send their coach out with a bang. Josh Blue stars as an unlikely pitcher who spins wild throws in just about every direction but the batter’s.

Affiliate UCP of Los Angeles, Ventura and Santa Barbara Counties was invited to the exclusive Hollywood premiere of the film this week and got a chance to speak with Josh Blue and the producers of the film about the character.

“Josh Blue said what he most liked about the character is that he is treated equally.” said Amy Simons, Chief Development Officer of UCP of LA. “Pretty much every one in the film is made fun of and Josh’s character is no exception. He’s not singled out because of his disability.

Order your copy now through this link and the producers of “108 Stitches” will donate a portion of the proceeds to UCP to help provide services support for people with disabilities.

Enabled by Design-athon Happening This Fall

Design-athonUnited Cerebral Palsy is bringing you another great event this fall! Sign up now to attend Enabled by Design-athon: D.C. Edition November 5-7. UCP’s Life Labs initiative is hosting this dynamic event to encourage innovation by designers, inventors, hackers and makers for the benefit of people with disabilities.

Spread the word to those you know who have the big ideas and perspective that have made three previous events in London, D.C. and, recently, Sydney, Australia, such a success. We’re looking to bring together teams of dreamers, including people with disabilities, to design and prototype accessible products which provide innovative solutions for the everyday challenges faced by people with various disabilities.

We’ll kick things off Wednesday evening, November 5 at the Great Hall at the Martin Luther King Memorial Library, where the public is invited to network and hear from keynote speaker Adrienne Biddings, Policy Counsel for Google. Adrienne will bring her expertise in making communications media accessible, diverse and responsive to the needs of all segments of the community. Other speakers include Brett Heising of www.brettapproved.com and Maria Town, the influential blogger who created http://cpshoes.tumblr.com/ and representatives from iStrategy Labs. Also participating is the Corcoran/GWU School of Arts + Design.

Thursday, November 7, begins the two-day design workshop at Google’s D.C. offices where team will compete to come up with the best design. A $25 registration fee is required for the workshop, however, the Wednesday evening event is free and you do not have to participate in the full workshop to attend (registration is required and space is limited)

“This is an opportunity for designers, technologists, engineers, students, caregivers and people with disabilities to collaborate and learn from each other how to use human-centered universal design concepts to solve every day challenges,” said Marc Irlandez, Director of Information, Technology and Life Labs at UCP. “We believe good design goes a long way towards helping people live as independently as possible by making day-to-day tasks just a little easier.”

The event is sponsored by Google, Sprint Relay, PCS Engineering, Sugru and the CEA Foundation.

Registration opens today! Get more information at http://ucpdesignathon.org/.

Google LogoSprint RelayCEA-Foundation-Logosugru-a496657ae9f8fc8b31a1207b5202ff56pic0_44331

New Event Series for Young People with Disabilities and Young Veterans

United Cerebral Palsy (UCP) and Student Veterans of America (SVA) announce a unique partnership that will allow both young adults with disabilities and young veterans to network and increase engagement and collaboration. The project was developed with the support of the National Youth Transitions Center and the Youth Transitions Collaborative (www.thenytc.org).SVA Circle JPEG

An educational series of events called “Engage: A Diverse Event Series” will take place between September and December 2014, covering finance, adaptive sports, disability and military history and wrapping up with a social evening of networking. The events will be open to youth and young adults with disabilities from ages 14-26 and veterans under the age of 35 in the Washington, D.C. metro area. Each event will have a specific subject of focus, addressing key social and educational components and offer a welcoming atmosphere.

The events are free but space is limited for each event, so registration is required. The hope is that by bringing together people from different backgrounds, they will be able to better learn from one another about their individual and shared experiences. Overall, the event series is designed to be a basis for further collaboration within the D.C. area, and serve as venue to further spread best practices.

EVENT DETAILSAdaptive Sports

Wednesday, September 24 from 6:00-8:00 p.m.

National Youth Transition Center at 2013 H Street NW in Washington, D.C.

Financial Education
Network and share your challenges with optimizing financial resources with financial planning experts including representatives from TD Bank, who will offer advice and guidance through interactive budgeting activities. Food and drinks will be provided!


Tuesday, October 21 from 6:00-8:00 p.m.

National Youth Transition Center at 2013 H Street NW in Washington, D.C.

Adaptive Sports
Continue to network while learning about adaptive sports with representatives from Disabled Sports USA who will share their stories, answer questions and demonstrate equipment. Food and drinks are provided!


Wednesday, November 18 from 1:00-3:00 p.m. 

American History Museum at 14th & Constitution Avenue, NW.

Disability and Military History
Hear from the curatorial staff of the Division of Armed Forces History and the Division of Science and medicine at the Smithsonian Institution Accessibility Program followed by behind-the-scenes tours of collections of armed forces and disability history. Snacks and drinks will be provided. And, of course, enjoy networking!


Wednesday, December 10 from 6:00 – 8:00 p.m.

National Youth Transition Center at 2013 H Street NW in Washington, D.C.

Networking Reception
Enjoy an evening filled with networking, food, beverages and music, as we wrap up our event series.

 

REGISTER BY CLICKING HERE!

 

Please contact O’Ryan Case, UCP’s Director of Membership and Public Education at (202) 973-7125 or ocase@ucp.org if you have any questions.

UCP’s STEPtember Challenge Begins Today!

10,000 Steps Daily Minimum

 

2,000 participants across the U.S.       are taking 10,000 steps a day from September 3-30                 in support of UCP.

United Cerebral Palsy (UCP) is pleased to announce the launch of the third annual STEPtember fundraising event today, formerly known as the World CP Challenge. STEPtember is an international health and fitness event that aims to raise awareness and support for individuals with disabilities and their families.

From September 3-30, STEPtember participants will get active while supporting a great cause. Throughout the event, more than 5,000 teams worldwide will challenge themselves to take 10,000 steps a day. Each of the steps—or bike rides, yoga classes, or physical therapy sessions, as nearly any activity can be counted—will propel the teams up virtual mountains and track their progress. Teams can compare their fundraising and step activity against others from around the world, racing each other up the seven tallest mountains and spurring their efforts to new heights. Together, the teams will help to raise critical support for the nearly 180,000 individuals with disabilities that UCP serves each and every day.

Already, more than $115,000 has been raised in the U.S., and well over $1 million internationally through thousands of participants. 

“UCP is very excited to kick off this year’s STEPtember event! This month promises to be an incredible, worldwide effort to raise awareness and support for people with disabilities. Steptember is such a great way for anyone, regardless of ability, to get active and truly impact our organization in the process,” said Stephen Bennett, President and CEO of UCP.

“Our family is personally affected by disability and we know first-hand what perseverance can accomplish. Joining in the STEPtember campaign, like a of Team Hoyt, a father-son racing duo who have volunteered to be UCP’s STEPtember ambassadors this year. Team Hoyt

Here’s how to get involved in the STEPtember Challenge: 

1) Learn More –  Check out the FAQ section on the STEPtember website, learn more about the communities that UCP serves, and understand how to get started!

2) Register Today – It’s not too late to get involved! Register today at www.steptember.us and we’ll connect you with a local affiliate that can provide an event packet and information to jumpstart your involvement.

 

3) Donate Now – Even if you don’t want to take the challenge and register, support the cause by donating to the UCP National team. We’re aiming to raise $10,000. Every dollar donated will provide critical funds to sustain community programming, and purchase much needed equipment for individuals with disabilities and their families.

Steptember will culminate on October 1st with World Cerebral Palsy Day, a global innovation project to change the world for people with cerebral palsy. 

Change the World, Win Prizes

WCPD14_Logo_USA_HRThe World Cerebral Palsy Day “Invent It” contest is heating up and there are big prizes out there for the best idea. Do you have an idea that could “Change the World in One Minute” for someone with a disability?

World Cerebral Palsy Day is a global awareness and innovation project designed to gather ideas from people living with CP and their supporters and to make the best of those ideas a reality. The first World CP Day in 2012 generated more than 470 ideas for a global competition to prototype them. The winning idea was a solar powered wheelchair inspired by a submission from a man in Turkey and turned into reality by a team at the University of Virginia. World CP Day represents people-power at its best. Who knows, your idea could the one that changes the world for a person with a disability and earn you up to $30,000 in prize money!

All you have to do it submit your idea via text or a short video that can be read or viewed in one minute by October 31. Just visit www.worldcpday.org to submit your idea for what might change the world for a person living with CP or another disability. Ideas will be judged this fall and a call will go out for inventors, innovators and engineers to create designs or prototypes for the winning ideas in January. Winners will be announced in June and awarded their prize.

However, winning it all is not the only way to win. Spot prizes of Apple iPads will be given away during September and October to the most creative and innovative ideas to date and a popular vote contest will be held via social media in October will receive a $500 People’s Choice Award. So, don’t dealy – get your ideas in to www.worldcpday.org today.