CPF Brochure.Pdf

A Message from our CEO We don’t hear enough about The Cerebral Palsy Foundation is We invite you to become part of cerebral palsy, nor know enough focused on an aggressive growth this important mission and to share about the condition. However, if strategy which will enable us to the impact we are having. you considered all the people in expand our already meaningful the US who have CP, we would be impact on the research, therapies the 12th largest city in America. and insights which improve lives. This is not a far off vision: CP is caused by damage to an CPF’s work is having an impact infant’s brain; and creates on lives today. movement disorders which last Richard Ellenson throughout a person’s life. One in The following pages will take CPF IS Chief Executive Officer CHANGING LIVES five people with CP can’t speak. you through the initiatives, One in three can’t walk. One in two approach, and strategic plan FOR PEOPLE people live in chronic pain. which is driving our work for WITH CEREBRAL PALSY the next three years. Over the past decade, there have been enormous advances in the world of medical research. However, TODAY people affected by cerebral palsy THROUGH RESEARCH often find themselves facing a deeply fragmented system, a lack of INNOVATION awareness about their condition, AND COLLABORATION and an inability to access appropriate therapies and interventions. Because of this, people with cerebral palsy often live lives which are significantly and unnecessarily compromised. Richard Ellenson and his son Thomas CP IS THE MOST COMMON PHYSICAL DISABILITY IN CHILDHOOD We Are Implementing Ways to Recognize CP Earlier Brain plasticity is greatest during the first 12 months of life. Yet too often CP doesn’t get recognized until later on. Cerebral palsy is due to damage to issues as early as three months into a the developing brain, either during child’s life. We are currently launching a pregnancy or shortly before birth. national pilot project to introduce this However, diagnosis is often delayed technique into key medical institutions until after a child is 24 months old within our Collaborative Network, to when brain plasticity (the ability of monitor results in trials, and to capture the brain to rewire itself to compensate information so that we can replicate it for specific challenges) is already on a broader scale. decreasing. OUR GOAL This program will be conducted in CPF is actively involved with medical three phases. Firstly we will provide institutions throughout the country with training for doctors and allied health LOWER THE AGE a sharp focus on addressing this urgent practitioners in tools available for early WHEN WE RECOGNIZE CP issue. Together we are advancing recognition of CP. We will then AND THEREBY PROVIDE provider knowledge about the complete a pilot study of infants born innovative tools which can detect with a high risk of CP and finally we will A GREATER CHANCE developmental delay in this group of disseminate our findings through high risk infants. General Movements stakeholder workshops. TO IMPROVE AN Assessment has the potential to INDIVIDUAL’S LIFE achieve significant recognition of these 6 OF 10 PEOPLE WITH CP HAVE NORMAL OR SUPERIOR We Are Advancing INTELLIGENCE Healthcare for People with Disabilities Today, women with disabilities receive shockingly substandard healthcare. In response, CPF is spearheading new initiatives to improve outcomes in breast health, gynecological care, and reproductive issues. Our work is changing how we define and address critical needs. THE FATALITY RATE FROM BREAST 80% OF GRADUATES FROM MEDICAL OUR GOAL CANCER IS THREE TIMES HIGHER SCHOOL HAVE NEVER EXAMINED A FOR WOMEN WITH DISABILITIES.* WOMAN WITH DISABILITIES.** EMPOWER WOMEN There are many other areas where the The condition of CP is complex and varied. results are nearly as shocking. The lack It can range from minor control issues to TO DEMAND A BETTER of accessibility in OB/GYN rooms as well devastating challenges across movement, as the fact that doctors routinely do not balance, speech, and vision. Doctors who STANDARD OF even mention the issue of pregnancy to don’t specialize in CP are often poorly HEALTH CARE AND women in their twenties, assuming – informed about how to approach issues or quite incorrectly – that it will not be a about potential interventions. CPF is THE INFORMATION part of their lives, results in significant aggregating and disseminating the gynecological and social issues for so knowledge that will drive change. TO FINALLY many women. * Strauss D, Cable W, Shavelle R. (1999) Causes of excess mortality in cerebral palsy. Developmental Medicine & Child Neurology. 41: 580– 5. 2 DELIVER IT ** Holder, Waldman and Hood in “Preparing Health Professionals to Provide Care to Individuals with Disabilities”, Int J Oral Sci 2009 THE VIRTUAL CP CENTER THE PAIN PROJECT In a world where information about CP The experience of pain is one of the We Are is fragmented and difficult to access, most prevalent, poorly understood, creating an efficient pathway to critical and inadequately treated conditions in resources is of the utmost urgency. the medical world, particularly as it As such, CPF is creating a Virtual CP pertains to disabilities. Up to 70% of Improving Center, a state of the art digital ecosystem pediatric patients with CP experience designed to inform, connect and empower pain on a monthly to weekly basis, users, as well as support general resulting in significantly decreased practitioners in best practices. This project, quality of life. CPF recently held a high Lives for leveraging the expertise of our world- BREAKTHROUGH TREATMENTS level international symposium on pain renowned Scientific Advisory Council, will AND EARLY INTERVENTIONS attended by dozens of the world’s provide people and families with CP a Perinatal white matter injury in experts. We are now creating the means to get the insights and information premature birth is the predominant structure to address and improve People they need in a manner that is accessible, form of brain injury leading to CP. understanding and approaches to this comprehensive and easy to navigate. CPF is funding work at Johns critical issue. Hopkins/Kennedy Krieger Institute which seeks to reduce with CP neuroinflammation in premature newborns through the delivery of nano-medicine through the blood- brain barrier. Our support has allowed a multi-disciplinary team to DESIGN FOR DISABILITY focus on integration of this Fashion is designed to dazzle and shape technology with day to day perceptions. However, when it come to observation in the NICU and nursery. individuals with disabilities, things so often fall flat. Most adaptive clothing is simply functional, not what you’d imagine on runways or in magazines. CPF is partnering with Fashion Institute of Technology, Pratt Institute and Parsons School of Design to change that. We are working with students and mentors to build insights and inspiration “JUST SAY HI“ IN NYC SCHOOLS: INNOVATION IN INCLUSION for fashions that can transform the fashion Inclusion in school settings is critical, but it’s also hard. Not accepting that experience, and perceptions, for women with fact minimizes the challenge – and often leads to failure. Inclusion requires disabilities. And we partner with fashion icons not only the right attitudes, but also insights and tools to align diverse such as Thom Browne and Derek Lam. Lastly, requirements. It takes a well defined and coordinated effort to make it this year, CPF will announce a partnership with happen. So CPF has partnered with the NYC Department of Education to Rent the Runway to tag their offerings with leverage our powerful “Just Say Hi” campaign in developing a vibrant thoughtful criteria targeted to address program which is now being implemented in the pilot stage in NYC women’s needs across a variety of disabilities. public schools. We Are Committed to Delivering Measurable Impact The CPF Process, Moments of Impact, defines key times in lives of people with CP when a properly implemented intervention, or approach can change a future. FIRST CPF DEFINES MOMENTS WE THEN COLLABORATE WITH conversation: the first steps needed for OF IMPACT IN THE LIVES OF KEY INSTITUTIONS TO IMPLEMENT change. Additionally our expert videos PEOPLE WITH CP OUR APPROACHES provide smart, usable information on very specific topics. CPF works closely with broad stakeholder The diverse and fragmented ecosystem groups to identify the critical moments within the world of CP often keeps FINALLY WE TRACK OUR WORK across the lifespan where we can have effective interventions from being measurable impact in improving lives. delivered to patients. As such, CPF has TO ENSURE MEASURABLE IMPACT Once we define these priority areas, we built a robust Collaborative Network, CPF’s work responds specifically to unmet aggregate and curate knowledge about including many of the nation’s leading needs and addresses challenges within a appropriate interventions and therapies, medical institutions, to serve as our complex environment. Launching this as well as finding breakdown in the dissemination hub. This model allows work, however, is only the beginning of delivery of effective services. active and iterative implementation of the our involvement. In every initiative, we work, and also creates a template to work closely with all involved parties to NEXT WE DEVELOP INTERVENTIONS distribute it throughout our network and ensure positive, short-term impact. In this AND INSIGHTS TO ADDRESS THE beyond. way, CPF is ensuring our mission is truly MOST PRESSING ISSUES met: empowering patients and informing medical practitioners about insights and CPF’s novel approach brings together our CPF’S MEDIA PARTNERS HELP interventions that can significantly Scientific Advisory Council, which includes BUILD AWARENESS ABOUT improve lives for people with CP and many of the country’s most highly-regarded CEREBRAL PALSY - AND CPF related disabilities.

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