Support Groups for Cerebral Palsy
There are five main organizations that provide services for individuals cerebral palsy (CP). These organizations work on behalf of parents and people with CP to advocate for civil rights, change social policy, do research, affect public policy, and advocate for equal opportunities, and a higher quality of life for disabled people.Get A 100% Free CASE Evaluation
International Cerebral Palsy Society (ICPS)
The first organization is the International Cerebral Palsy Society which was started in the United Kingdom. Its creation spreads awareness and encourages acceptance of the millions of people with CP. Primarily, it is trying to reduce the stigma and reinforce that CP is a medical condition and not a punishment or curse to a family or individual. It assists people with CP by offering services to better enable their assimilation and participation in society. The society disseminates information regarding new research, new developments and new treatments, changes government policies, and provides educational programs for the public. The sharing of knowledge between families and professionals is widely supported. It reaches out to different countries with seminars to empower people to seek out information and support for their condition. They provide answers about the challenges of CP; emotional, physical, educational, and financial. Forty-nine countries with 140 members comprise ICPS. The members must register as non-governmental entities, and their membership requires approval. ICPS members in Europe formed a coalition called CP-ECA which is an active member of the European Disability Forum, which is an independent organization representing 80 million Europeans with disabilities.
Cerebral Palsy International Research Foundation (CPIRF)
CPIRF is a non-profit organization with a primary goal of funding research, obtaining federal support, and promoting educational services for people with CP. Their primary focus is to find ways to prevent the causes of CP, discover cures for developmental disabilities, and provide medical-scientific evidence to improve care.
The $40 million raised by CPIRF for research supports 500 biomedical, clinical science and bioengineering projects throughout the world. The research focuses on early diagnosis, physical rehabilitation, and preventative strategies to prevent secondary complications. The foundation shares discoveries which allow researchers and the general public full access. Their goal is to increase public funding to educate future physicians and other professionals about treating patients with CP.
Surveillance of Cerebral Palsy in Europe (SCPE)
Surveillance of Cerebral Palsy in Europe is trying to develop a centralized database of CP cases from all CP registries in Europe. They intend to use this data to monitor trends and to plan services. To raise the standard of care in the medical community, SCPE wants all physicians and researchers to use a universal classification system for CP cases. This way, SCPE can identify risk factors for CP, find ways to prevent CP, raise the standards of treatment, and improve the overall quality of life for those afflicted with the condition. SCPE published a comprehensive reference guide that includes all terms and definitions related to the diagnosis, symptom, signs, and treatments for CP.
MyChild is a comprehensive resource for CP within the United States. It operates a national call center. The call center fields questions about CP on a myriad of topics. It shares a network of resources, therapies, technology, local support groups, community and governmental services. They have a comprehensive website and Facebook page for those with the condition to connect and inspire each other. It also funds research to find solutions to eliminate CP and reduce the associated symptoms and complications.
United Cerebral Palsy (UCP)
An active non-profit charity serving the CP community in the United States, UCP is a network of state and local advocates and educators who offer support for individuals with CP and other disabilities such as Down's Syndrome, autism, and traumatic brain injury sufferers.
There are over 100 affiliates nationally, and internationally that help families find local resources and enroll in programs that address each community's' individual needs. Educational support, employment training, housing assistance, transportation assistance and recreational programs help raise the quality of life for those with disabilities. Legal advocacy for their special needs is a primary mission of UCP. It played a pivotal role in the passage of the Americans with Disabilities Act which provides broad civil rights protections to disabled individuals, reinforces the need to be their own advocates by voting, and have access to the latest technology in order to fully interact with others.