Cerebral Palsy Resources
Founded by a group of parents in 1949, United Cerebral Palsy is an organization that advocates for people with a spectrum of disabilities caused by or related to cerebral palsy. Through a program of affiliates and a vibrant online community, UCP connects those with cerebral palsy, their families, and their caregivers with others who can help them live the most full and satisfying life possible. Their well-designed website features information about their different programs (such as My Child Without Limits, an early intervention program), in addition to a searchable list of their local affiliates by state and zip code, information on education and safety, housing and health care, and even a list of international resources.
United Cerebral Palsy of Philadelphia is dedicated to improving the lives of people with a spectrum of disabilities and their families and caregivers through education, advocacy, and various support services. They can help with therapy, community residential care programs, and job training and support, to name just a few. Their website provides information on their programs, helpfully broken into categories such as Adult, Children, and Residential, and also has a calendar, a list of events, and a news section.
Part of the National Institutes of Health, the National Institute of Neurological Disorders and Stroke (NINDS) aims to improve the lives of those affected by neurological diseases and stroke through research. Since it was formed by the U.S. Congress in 1950, NINDS has grown to hold a key role in the study of the more than 600 neurological disorders that strike Americans each year, from autism to traumatic brain injury. They fund all manner of research projects and also provide important clinical information to researchers, physicians, and the public. This website houses details on the different disorders, on their research programs, links to top news stories, and a list of government resources, among other things.
As the membership division of the National Spinal Association, the National Spinal Cord Injury Association (NSCIA) works to build a community of people dealing with a spinal cord injury or disability so that they can help themselves by helping each other. NSCIA also advocates for the rights of this community and provides local chapters that can help members out in a more immediate, personal capacity right where they live. On their website you’ll find information about membership, about local chapters and support groups, a calendar of events, and links to countless articles and research on spinal cord injury and how to live with it.
This nonprofit organization has several equally important goals: to provide information and assistance to parents who have a child with a visual impairment, whether it stems from another disability or not; to support and advocate for those parents and children; and to allow for networking and outreach opportunities. On their website, you can join the organization, find conference information and a parent directory, look at links related to a specific diagnosis, and order their various publications on visual impairments in children, among other things. Their site is also available in Spanish.
The Disability Rights Network of PA advocates for the rights of disabled Pennsylvanians statewide in a variety of ways, including through public outreach and legal avenues. This website lists conferences and videos, advocacy toolkits, and a good number of other informative links broken down by topic.
This hospital is the only one in Philadelphia that provides interdisciplinary services for children with cerebral palsy. They have a diverse treatment team including everyone from orthopedic surgeons to seating experts, and they also have a medical care and rehabilitation facility called Children’s Seashore House for those with the most severe disabilities. This website provides a summary of medical information and options, as well as the number to call to make an appointment for your child.
On this well-designed website, the National Dissemination Center for Children with Disabilities presents information about disabilities divided into sections for different ages, for schools and administrators, for communities, and for families. They also delve into disability and education laws and research, and they have a Spanish version of the site. They provide many publications and newsletters as well, and are happy to offer individualized help if needed.
The American Academy for Cerebral Palsy and Developmental Medicine is an organization dedicated to the scientific education of physicians and health professionals and researchers on cerebral palsy and other diseases beginning in childhood. Their website gives information on meetings, publications, and job postings, as well as a section for patients and their families and caregivers to find a physician and other helpful websites.
The Medicaid website provides information on this government-sponsored health care program, as well as information on the Children’s Health Insurance Program (CHIP). Go here to find out whether you are eligible for either program, what the laws are in your state, and what the details of the Affordable Care Act are. They also provide a variety of links to other related sites.
The Disability.gov website is a portal that directs you to other sites based on the topic you choose. As a federal government website that aims to provide information on disability services nationwide, it links to over 14,000 resources, so it will take a while to get through them all. However, its topics are clearly listed in categories such as Civil Rights, Education, and Housing, and they have a section with a newsletter and press releases that cover up-to-date news on a variety of related topics.
The National Center for Learning Disabilities, founded in 1977, works on behalf of students with learning disabilities from dyslexia to executive functioning in order to help them obtain a high school diploma and prepare for a successful transition to college or into the workforce. This website has a wealth of information on different types of learning disabilities, provides FAQs and podcasts on related topics, and has resources for both parents and adults who themselves have learning disabilities. Their blog features information and stories by their public policy director, their team members, and parent contributors.
The “MOVE” in MOVE International stands for Mobility Opportunities Via Education/Experience, and this aptly describes what this nonprofit does for those with severe disabilities. Through one specific program aimed at children and another aimed at adults, MOVE International teaches people to sit, stand, and walk on their own. The goal is to increase each person’s independence and ability to engage in his or her home life and in the community. Their website provides information about the MOVE systems, where to go to see a MOVE program in action, and success stories.
While you’ve probably heard of the March of Dimes, you may not know about it in any detail. What this foundation does is support women in having healthy pregnancies and support them and their families if something goes wrong. Through providing access to the best pregnancy and newborn health information, the March of Dimes tries to give every baby a strong start in life. Their website provides links to local chapters and advocacy programs, spotlights different physicians and parents with brief biographies, and provides a community where people can share their stories or join a March of Dimes event. Information about the many research projects March of Dimes helps to fund is also available, as is a Spanish-language version of the site.
This website has a listserv for parents of children with cerebral palsy so that they can share information and stories with each other in a caring environment. It also has an FAQ about cerebral palsy that goes into some detail about the different types of CP, treatment options, and descriptions of equipment, and a page that describes CP in terms a child could easily understand.
In existence since 1967, the Epilepsy Foundation of America has been educating people about epilepsy and advocating for those with epilepsy for almost 50 years. Their website is a trusted online authority on this little-understood condition, containing medical information about epilepsy, articles about living with epilepsy whether as a patient or caregiver, volunteer opportunities, and up-to-date research on this seizure disorder. A version of the website is also available in Spanish.