UCP Launches “Speak for Yourself,” a PCORI-Funded Project to Establish a Patient-Centered Research Network for Individuals with Disabilities

FOR IMMEDIATE RELEASE                                  Contact: Randi Moore, (202) 494-4638

Washington, D.C. (May 3, 2016) – United Cerebral Palsy (UCP) has launched Speak for Yourself, a two-year project funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award to address the various barriers to access that discourage or prevent individuals with disabilities from participating in medical research.

Speak for Yourself is a movement that will build a network of individuals with disabilities who are trained and empowered to become directly involved in medical research that improves their health outcomes.

“People with disabilities have long expressed the desire not only for more opportunities to participate in research, but for a voice in the decision-making around the ‘what’, ‘how’, and ‘why’ of disability-focused research. Speak for Yourself aims to empower people with disabilities to work alongside researchers to ensure that the future of research meets the needs of real people,” said Stephen Bennett, UCP’s President and CEO.

Speak for Yourself will include various opportunities for online engagement and access to resources on research participation. Each year of the project will culminate in a one-day convening bringing together advocates and researchers to collaborate on how to build a more dynamic relationship.

“To promote health equity among people with disabilities, we need to pursue research that is meaningful to those most affected. To do so, people with disabilities must have a say in the research process. Speak for Yourself is a part of the solution to transform science and promote patient-centered outcomes,” said Katherine McDonald, PhD, Associate Professor of Public Health at Syracuse University.

UCP believes that relevant and well-informed patient-centered clinical research is essential to advancing healthcare access, quality, and choice for individuals with disabilities. A patient-centered approach to research that encourages individuals with disabilities to provide input on the gaps in evidence, best practices, and direction of disability-focused research is central to creating a life without limits

More information about Speak for Yourself can be found at http://mylifewithoutlimits.org/speak-for-yourself/

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About United Cerebral Palsy

United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities. Together with a network of affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence. For more information, please visit http://www.ucp.org.


About The Patient-Centered Outcomes Research Institute

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.

 

UCP Responds to Shooting at Inland Regional Center

In the wake of the most recent mass shooting in San Bernadino, California, United Cerebral Palsy offers our condolences to the victims, the staff at Inland Regional Center and the entire community that has been impacted by this senseless violence.

Any event like this is shocking, but this particular incident hit close to home as it involved Inland Regional Center. The center serves more than 30,000 people with developmental disabilities in two counties. Hundreds of employees there provide funding, case management and referrals to agencies such as United Cerebral Palsy of the Inland Empire and other sister organizations in the area.

Much remains to be learned about the identities of the 14 people who were killed and the others who were injured. Staff and clients of UCP of the Inland Empire were not involved. However, they have frequent contact with the Center and relationships with the people who were in the building yesterday working to help people with disabilities and their families.

“We are shaken by the thought that some of the most vulnerable members of our community, people with profound developmental disabilities, might have been harmed along with dedicated professionals who work so hard on their behalf,” said Shelly DeButts, spokesperson for UCP’s national office. “Places like the Inland Regional Center are supposed to be safe havens for individuals and families who already have many challenges to face in their daily lives. It is supposed to be a place where they can seek and receive much-needed help.”

“We are all people in this struggle together to support people with developmental disabilities,” said Greg Wetmore, President and CEO of UCPIE. “We are resilient because we are together and we are stronger and more powerful than any evil that produced this act of terror.”

We extend our sympathy to the victims and their families, but also to the tight-knit community of disability service providers and their clients who are now traumatized. You can find out more about the amazing work UCP of the Inland Empire does at http://www.ucpie.org/.

UCP Launches Innovative Fundraising Initiative

FOR IMMEDIATE RELEASE

CONTACT:

Shelly DeButts: 202-973-7175, sdebutts@ucp.org

Mobile App, Creative Platform Lets Supporters Donate While They Shop

 

 Washington, D.C. (November 2, 2015) – United Cerebral Palsy (UCP) announced today the launch of a new fundraising partnership with the CauseNetwork™, rolling out a free, branded online Marketplace and customized Mobile App for UCP affiliates in the U.S.   This partnership capitalizes on consumers’ shift toward “shopping for a cause”. When coupled with the widespread use of mobile devices for online purchases, expected to reach $100 million in 2015, fundraising of this magnitude can help expand the mission of UCP to aid people with a broad range of disabilities and their families.

“In this day and age, an organization like UCP has to be very creative with fundraising,” said Michele Levy, UCP’s Director of Individual Giving. “We know many people support our cause, but we have to give them easy, convenient and smart ways to show that support.”

CauseNetwork will create a customized shopping website for every interested UCP affiliate to enable supporters to make online purchases from over 1,000 retailers, up to 10% of which is donated to UCP. The same ability to shop for their cause is enabled through the UCP customized Mobile App, which also includes messaging for affiliates to stay in touch with their donor-members. The entire platform is provided at no cost to the affiliates.

“We work to give UCP a way to do more for their affiliates, without having to ask donors to spend more. Through our platform, members simply redirect their online shopping through their UCP affiliate’s free, branded website and Mobile App. Now donors can contribute to the UCP mission while getting the same great prices from some of the biggest retail brands: Amazon, Target, WalMart, Best Buy and over 1,000 more,” said Clay Buckley, President of CauseNetwork, Inc.

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About United Cerebral Palsy

United Cerebral Palsy (UCP) educates, advocates and provides support services through an affiliate network to ensure a life without limits for people with a spectrum of disabilities. Together with a network of affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people with disabilities by supporting more than 176,000 children and adults every day. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence. For more information, please visit http://www.ucp.org.

 

About the CauseNetwork, Inc.

CauseNetwork™ is a marketplace for giving. A revolutionary and unique fundraising platform built for the non-profit community that generates tax-free donations to a cause through every purchase from partner retailers. Supporters of the cause simply shop online and a portion of each purchase (at no additional expense to them) is automatically provided to their individual cause. For more information, please visit www.causenetwork.com or contact Mary O’Donnell, Mary@causenetwork.com.

The Pope, A New Speaker and a Budget: What’s Going on in Washington Right Now

It has been an exciting few weeks here in Washington, D.C.  It started with the city in celebration mode to host the pope and ended with the Speaker of the House resigning and the House and Senate passing a short-term continuing resolution (CR) that avoided a government shutdown.iStock_000012685951XSmall

While the CR is only short-term it was necessary as Congress has yet to pass any of the 12 annual appropriations bills and send them to the president’s desk.  As is the CR will continue to fund the government at fiscal year 2015 levels through December 11, 2015.

The current CR means that funding for programs and agencies important to the disability community, including the National Institutes of Health, Centers for Medicare and Medicaid and Centers for Disease Control and Prevention remain intact.

However, the looming December deadline still presents many reasons for us to remain watchful.  In addition to carving out a larger and longer-term budget agreement that must address across the board cuts and extend past the 2016 elections, Congress must also address hitting the federal debt ceiling.   

As for the new speaker of the house, it is likely to be Majority Leader Kevin McCarthy (R-CA).  However, many members are running for the other key positions in the leadership.  What is clear is that no matter who is nominated, they will surely have a full plate to deal with.

Here at UCP, we will continue to monitor the discussions and update you as the process proceeds.

 

Successful Steptember Challenge Raises $3.5 Million

Another September has come and gone and 2,236 people on 721 teams across the U.S. stepped up! Those of you who took the Steptember challenge joined ranks with a global community of people dedicated to taking 10,000 steps a day to help raise money and awareness for people with disabilities and their families.

That’s right – 10,000 steps a day! Every day for 28 days!

We made it!

Globally, we raised more than $3.5 million to help United Cerebral Palsy and its affiliates continue to provide vital services and supports for people like Matthew.

Matthew and his family

Matthew and his family

Three different teams stepped up for Matthew, raising nearly $3,000. Matthew attended United Cerebral Palsy’s Early Intervention Program when he was young and for the past few years he has attended the SPIRIT Saturday Recreation Program. Those programs might not exist without people like you who support UCP.

“We are so grateful to everyone who has donated to United Cerebral Palsy in Matthew’s name and are taking those steps and saving up their pocket change or writing out those checks,” said his mother, Maryann.

On behalf of Maryann, Matthew, the Steptember team and UCP’s affiliates, we thank you!

P.S. There’s still time to get your donations in. We’re not counting steps, but you can still contribute to your favorite team or to UCP’s national office until November 1 at www.steptember.us.

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Steptember Logo Medium (5in)

Story Behind Viral Photo Better Than You Think

 

Dan Garringer_Viral Image

McDonald’s employee Kenny helps Dan Garringer with Meal

Chicago, IL (September 25, 2015) – The full story of the man pictured in a photo that went “viral” this week is even more touching than you might imagine. The snapshot posted to Facebook by a customer showed McDonald’s employee Kenny helping Dan Garringer cut and eat his food. Many news outlets reported that Dan ordered his food then requested some help from Kenny, who promptly closed his till at the busy Union Station restaurant and helped Dan eat his meal. More than 1 million people have liked and shared the photo on social media, with many commenting about Kenny’s compassion and kindness. Kenny was given special recognition by the owner/operator of his McDonald’s franchise.

What many of those commenters don’t realize is that this photo speaks volumes to those who know the story of Dan’s life. Dan has cerebral palsy and has strived his entire life to live as independently as possible as a participating and valued member of his community.

“People with disabilities are just like everyone else.  We love life and being part of our community.  We go to restaurants, stores, the movies and coffee shops and take Metra and public transportation to be able to experience life as everyone else does,” Dan said. “I know that Kenny is getting all of the credit, but, in my mind, he is representing all of the employees at the Union Station McDonald’s. They are wonderful, caring people who make me feel that I am just like everyone else, and they do not treat me like I am a person with a disability…they treat me like I am just Dan, someone that loves McDonald’s fries.”

In 1993, Dan and his wife Clarina – who passed away last year – moved in a group home where UCP Seguin of Greater Chicago can provide the support and services he needs. UCP Seguin is an affiliate of United Cerebral Palsy, a nonprofit organization for people with disabilities.

Dan spent his childhood with his family but moved into a nursing home as an adult, where he met and married his wife. For years he was told he was “too handicapped” to work. But after he connected with UCP Seguin, he worked with a case worker to pursue a writing career. For more than a decade, he wrote a column for his local newspaper Suburban Life called “The View from Here.” Using just a thumb and forefinger on one hand, Dan wrote about human potential and advocated for people with disabilities to be fully included in life – concepts neatly captured in this one image.

“Dan often wrote about experiences very much like this…and many times the opposite of this, as he was faced with discrimination, insults, and worse,” said Jim Haptonstahl, Executive Vice President of UCP Seguin “He has been overwhelmed by the reaction to this story. But he’s good with it, if it promotes greater acceptance and inclusion of people with disabilities in society.”

United Cerebral Palsy and its affiliates such as UCP Seguin advocate for that greater acceptance and inclusion, providing the services needed to ensure that people like Dan have the care, education, employment, housing and other opportunities they need.

“Every one of us has certain challenges,” said Jim. “Dan’s challenges mean he sometimes needs a little help from his fellow community members. Kenny gets that. And, that’s cool.”

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About UCP Seguin of Greater Chicago

Seguin of Greater Chicago is a 501(c)(3) nonprofit human services agency dedicated to enriching the lives of people with disabilities. Providing programs and services from birth to old age, UCP Seguin helps children and adults with disabilities achieve their potential, advance their independence and act as full members of the community. Its programs include innovative training and education, family support, employment and life-skills training, residential services, and foster care. For more information, visit www.ucpseguin.org.

 

Engage: A Diverse Event Series – Adaptive Rowing

Join United Cerebral Palsy and the National Veterans Center — powered by Student Veterans of America on Saturday, October 24 for an exciting day, filled with networking and the opportunity to learn about adaptive rowing and ways to become involved– as well as a fun, yet competitive rowing tournament! This event is a part of our 2015 “Engage” series and is open to youth and young adults with disabilities and young veterans. It is fully accessible and located near the Foggy Bottom and Farragut West Metro stops (blue, orange and silver lines). The event is FREE to attend! For more information, please visit

Innovators with Disabilities to Pitch to Major Corporations

UCP’s Life Labs Holds Innovation Lab at USBLN National Conference

 

Washington, D.C. (September, 21, 2015) – United Cerebral Palsy has partnered with USBLN, a national nonprofit that helps businesses drive performance by leveraging disability inclusion, to host an Innovation Lab during USBLN’s 18th Annual National Conference & Biz2Biz Expo in Austin, TX at the end of September.

Innovation Lab, part of UCP’s Life Labs initiative. brings together innovators from all walks of life to compete on teams to dream up the next big idea for people with disabilities. Using human-centered principles of Universal Design, the teams work with mentors and facilitators to tackle problems ranging from mobility to communication in an effort to help improve the every day lives of people with disabilities.

At the conference, Innovation Lab teams will consist of participants of the Career Link Mentoring Program. The program is a collaboration of USBLN and Cornell University’s Employment and Disability Institute, which provides a 6-month career mentoring opportunity to college students and recent graduates with disabilities through linkages to business professionals from USBLN member companies.

“Rather than continuing to retrofit our world to accommodate people with disabilities, there’s no reason why we can’t encourage future designs to work for people of all abilities,” said Gabriel Forsythe Y Korzeniewicz, Life Labs Program Manager. “Past Innovation Lab events have included people with and without disabilities – from students to engineers, to physical therapists and people from a variety of backgrounds. We’re excited that this will be our first Lab in which all of the competitors have disabilities. We’re interested to see what kinds of unique ideas will come from this group.”

From September 27-29 the Innovation Lab teams will compete for one of two opportunities to pitch their ideas “Shark Tank”-style to major corporate players such as IBM, Sprint, Verizon, 3M and Mitsubishi – all part of USBLN’s membership of 5000 of the top companies in America. On September 30, each team’s idea will on display at the Bizt2iz Expo so conference attendees can vote on which two ideas to elevate to the level of a pitch to potential investors.

A Toy Guide for All Children

 

#Toys for All Twitter Chat Planned for August 26 at 2:00 p.m.

On Wednesday, Toys”R”Us® released of the 2015 Toys”R”Us Toy Guide for Differently-Abled Kids®, an easy-to-use toy selection resource for those who know, love and shop for children with special needs. This annual, complimentary publication is available now in Toys”R”Us and Babies”R”Us® stores nationwide and online, in both English and Spanish, at Toysrus.com/DifferentlyAbled. For more than 20 years, this beloved catalog has been a go-to shopping guide for families in the special needs community, showcasing specially selected toys that aid in the skill development of children who have physical, cognitive or developmental disabilities. This year, Toys”R”Us is partnering with Nick Lachey, father, philanthropist, multi-platinum recording artist and television personality, who appears on the cover of the Guide alongside 5-year old Josephine Gonzalez from New Jersey.

Cover of 2015 Toys R Us Toy Guide with Nick Lachey

While Lachey has worked on numerous exciting projects around the globe throughout his career, he is most proud of being a father of two and an advocate for children’s causes. Inspired by his brother Zac, who lives with Asperger syndrome, Lachey established the Nick Lachey Foundation, a non-profit organization dedicated to helping children, families and communities in need within the United States in 2007.

“Children’s causes are a huge passion of mine, so I was honored to collaborate with Toys”R”Us to lend my support to something as special as the Toys”R”Us Toy Guide for Differently Abled Kids,” said Nick Lachey. “Building on a 20-year reputation of being a beneficial resource for parents and gift givers shopping for special needs children, the Guide is so valuable because it removes the guesswork, providing trusted recommendations of toys that will appeal to a child with physical, cognitive or developmental disabilities.”

#ToysForAll
On Wednesday, August 26 at 2pm, Toys”R”Us, along with its special needs partners, including the United Cerebral Palsy will host a Twitter Chat to provide followers with tips for selecting toys for children with special needs. The company is encouraging fans and followers to join the conversation and support the power of play by using #ToysForAll.

 

Young Girl with Toy

 

Identifying the Best Toys Based on a Child’s Individual Needs
Because all children are unique, regardless of ability, toys in this catalog are not categorized by disability, gender or age, and are everyday playthings that can be enjoyed alongside siblings and friends. Instead, the Guide pairs toys with icons representing a variety of skill sets, such as Auditory, Language, Social, Creativity and more, helping gift-givers choose toys most suitable for the child they are shopping for.

To identify items that best contribute to the development of children with physical, cognitive and developmental disabilities, Toys”R”Us has collaborated with the National Lekotek Center, a nonprofit organization dedicated to making play accessible for children of all abilities, to vet each of the toys featured in the 64-page buying guide.

Gift-givers who prefer to shop from home or on-the-go can take advantage of the shop-by-skill option at Toysrus.com/DifferentlyAbled, where they can select a specific skill set to refine their search. The dedicated website also features a special Toys”R”Us App Guide for Differently-Abled Kids, providing recommendations for mobile apps, using the same skills criteria featured within the traditional Guide. The App Guide is available to make app discovery and mobile technology accessible to kids of all abilities by identifying apps that help build individual skill sets, and are appropriate for children with special needs.

To Download Behind-the-Scenes Footage of the 2015 Guide Cover Shoot, Click here: https://toysrus.sharefile.com/d-s98336cb65b84b978.

Charitable Giving at Toys”R”Us
The philanthropic mission of Toys”R”Us, Inc. and the Toys”R”Us Children’s Fund is to keep children safe and help them in times of need. The Toys”R”Us Children’s Fund contributes millions of dollars annually to various organizations. Each year, several UCP affiliates use grants from the Children’s Fund to expand or improve upon toy/play therapy programs for children with disabilities.The Fund also provides grants to leading special needs organizations, furthering the company’s commitment to children of all abilities. In addition to financial and product donations, Toys”R”Us, Inc. hosts in-store and online fundraising campaigns annually that raise millions of dollars for the company’s signature philanthropic partners.

UCP Receives Motorola Solutions Foundation Innovation Generation Grant

United Cerebral Palsy has received a grant for $20,000 as part of the “Innovation Generation Grant” program from the Motorola Solutions Foundation, the charitable arm of Motorola Solutions, Inc. Through the grant, UCP’s Life Labs initiative will distribute universal design curriculum modules through iTunes U and offer an immersive two-day design challenge, called an Innovation Lab, to engage students across disciplines in human centered design concepts.

Life Labs Logo

The Innovation Generation program awards organizations such as UCP that foster and support science, technology, engineering and math (STEM) initiatives for teachers and U.S. preschool through university students – especially girls and underrepresented minorities, such as people with disabilities.

“It’s amazing to watch people who participate in an Innovation Lab leave with a greater understanding of the challenges that people with disabilities face and a new confidence that they can participate in solving some of those challenges,” said Josef Scarantino, Acting Director of UCP’s Life Labs. “This program has the power to change career trajectories and open up a new worlds of creativity and innovation.”

Innovation Lab HeaderAfter several successful Innovation Lab events in 2014 and 2015, UCP’s Life Labs shaped the Innovation Lab into a curriculum, which can easily be adapted to any school degree program. Utilizing Apple’s iTunes U education content platform, UCP’s Life Labs plans to build a large national presence of students and open the curriculum to outside academic and industry collaboration. The curriculum and Innovation Lab events will be made available to UCP’s network of eighty affiliates through a toolkit that combines all the necessary resources.

The Motorola Solutions Foundation grant program overall will impact about 900,000 students and teachers, each receiving an average of 100 programming hours from our partner non-profit organizations and institutions. Programs will support special populations including girls and women, underrepresented minorities, the lesbian, gay, bisexual and transgender community, people with disabilities and the military.

“The Motorola Solutions Foundation created the Innovation Generation Grant program eight years ago to support educational experiences that spark students to turn their dreams into the innovations that will shape our society’s future,” said Matt Blakely, director of the Motorola Solutions Foundation. “Organizations like UCP are teaching tomorrow’s leaders that careers in engineering and technology are not only fun, but also within their reach.”

For additional information on the Motorola Solutions Foundation grants programs, visit: http://responsibility.motorolasolutions.com/index.php/solutions-for-community/ and for more information on UCP please visit www.ucp.org

 

About Motorola Solutions Foundation

The Motorola Solutions Foundation is the charitable and philanthropic arm of Motorola Solutions. With employees located around the globe, Motorola Solutions seeks to benefit the communities where it operates. The company achieves this by making strategic grants, forging strong community partnerships and fostering innovation. The Motorola Solutions Foundation focuses its funding on public safety, disaster relief, employee programs and education, especially science, technology, engineering and math programming. For more information on Motorola Solutions Corporate and Foundation giving, visit our website: www.motorolasolutions.com/giving.