Cerebral Palsy: Answers and Advocacy
Having a child diagnosed with cerebral palsy can be overwhelming. It is critical that you find reliable sources of information on the condition, as well as national organizations for assistance. The Cerebral Palsy Information Page: National Institute of Neurological Disorders and Stroke (NINDS) is a great resource for parents and others who have questions about cerebral palsy and need answers.
WHAT IS CEREBRAL PALSY?
Cerebral Palsy is a general medical term used to describe a group of chronic conditions that impair a person's movement. These chronic conditions appear either at birth or in the first few years of life. It is believed that these disorders are caused by either damage to the areas of the brain that control motor function, or faulty development of those areas of the brain. The symptoms include difficulty with balance or walking, involuntary movements and/or problems with fine motor tasks, such as writing or typing. Some children with cerebral palsy also have other medical disorders including seizures or mental impairment, but cerebral palsy is not always paired with these other disorders.
IS THERE A CURE?
There is no cure for cerebral palsy. However, thanks to medical research and advances in medicine many patients have increased quality of life and are living longer.
In fact, no standard therapy works for all patients, which is why it is crucial that each patient diagnosed with cerebral palsy consult with the appropriate medical specialists trained to treat children with this condition. Sometimes medication is used effectively to control seizures and muscle spasms. Special braces and custom wheelchairs may also provide children with better mobility. Surgery and other mechanical aids can assist patients as well.
WHAT ORGANIZATIONS ARE INVOLVED IN CEREBRAL PALSY RESEARCH AND ADVOCACY?
Epilepsy Foundation
4351 Garden City Drive
Suite 500 Landover, MD 20785-7223
http://www.epilepsyfoundation.org
Tel: 301-459-3700
800-EFA-1000 (332-1000)
Fax: 301-577-2684
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
http://www.marchofdimes.com
Tel: 914-428-7100
888-MODIMES (663-4637)
Fax: 914-428-8203
Easter Seals
230 West Monroe Street
Suite 1800
Chicago, IL 60606-4802
info@easterseals.com
http://www.easterseals.com
Tel: 312-726-6200
800-221-6827
Fax: 312-726-1494
United Cerebral Palsy (UCP)
1660 L Street, NW Suite 700
Washington, DC 20036
national@ucp.org
http://www.ucp.org
Tel: 202-776-0406
800-USA-5UCP (872-5827)
Fax: 202-776-0414
National Disability Sports Alliance
25 West Independence Way
Kingston, RI 02881
info@ndsaonline.org
http://www.ndsaonline.org
Tel: 401-792-7130
Fax: 401-792-7132
Children's Neurobiological Solutions (CNS) Foundation
1726 Franceschi Road
Santa Barbara, CA 93103
info@cnsfoundation.org
http://www.cnsfoundation.org
Tel: 866-CNS-5580 (267-5580)
805-965-8838
Children's Hemiplegia and Stroke Assocn. (CHASA)
4101 West Green Oaks Blvd., Ste. 305
PMB 149 Arlington, TX 76016
info437@chasa.org
http://www.hemi-kids.org
Tel: 817-492-4325
WHERE CAN I FIND OUT MORE ABOUT CURRENT RESEARCH STUDIES?
Please click on CLINICAL TRIALS to learn more about the current research the National Institutes of Health is conducting on issues related to Cerebral Palsy. http://clinicaltrials.gov/search/term=Cerebral%20Palsy
- Cerebral Palsy: Hope Through Research
Cerebral palsy information booklet compiled by the National Institute of Neurological Disorders and Stroke (NINDS).
- NINDS Spasticity Information Page
Spasticity information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke. - Children with Porencephaly, Stroke, and Cerebral Palsy Sought for Study
Lay-language descriptions of new program announcements and clinical trials seeking patient volunteers.
- La Parálisis Cerebral: Esperanza en la Investigación
Información de la parálisis cerebral/Spanish-language booklet on cerebral palsy compiled by the National Institute of Neurological Disorders and Stroke (NINDS).