cerebral palsy research organizations
support groups for children with infantile cerebral palsy
links to websites with information on cerebral palsy and alternative treatments and therapies

cerebral palsy medications and drugs
alternative health clinics
alternative treatments for cerebral palsyalternative health clinicsalternative treatments for cerebral palsyalternative health clinicsalternative treatments for cerebral palsycerebral palsy discussion groups on-line websitesalternative treatments for cerebral palsyassistive technology products
conductive education information
cerebral palsy discussion groups on-line websites
clinical trials for cerebral palsy

cerebral palsy resouces and information

Suggested and reviewed by Lewis Mehl-Madrona, M.D., Ph.D.

Program Director, Continuum Center for Health and Healing,
Beth Israel Hospital / Albert Einstein School of Medicine

Hosted and maintained by The Healing Center On-Line © 2001

Cerebral Palsy Research and Organizations

American Academy for Cerebral Palsy and Developmental Medicine (AACPDM): AACPDM is a multidisciplinary scientific society devoted to the study of cerebral palsy and other childhood onset disabilities. The scope of the Academy's interests has expanded from an initial focus on cerebral palsy into related areas of developmental medicine, including spina bifida, neuromuscular disease, traumatic brain injury and other acquired disabilities, genetic disorders, communications problems, and specific learning disabilities. The site includes libraries, news, research, conferences and membership opportunities.

United Cerebral Palsy (UCP): For 50 years, UCP has been committed to change and progress for persons with disabilities. The national organization and its nationwide network of 114 affiliates in 41 states strive to ensure the inclusion of persons with disabilities in every facet of society - from the Web to the workplace, from the classroom to the community. As one of the largest health charities in America, UCP's mission is to advance the independence, productivity and full citizenship of people with cerebral palsy and other disabilities, through our commitment to the principles of independence, inclusion and self-determination.

UCP-Net: United Cerebral Palsy Afilliates: Use the page to find the United Cerebral Palsy Center or Afilliate in your area. Simply enter your State or ZipCode.

Children's Neurobiological Solutions, Inc. (CNS): A national, non-profit, 501(c)(3) organization, whose mission is to orchestrate cutting-edge, collaborative research with the goal of expediting the creation of effective treatments and therapies for children with neurodevelopmental abnormalities, birth injuries to the nervous system, and related neurological problems. Recent advances in biomedicine, particularly in the fields of developmental neurobiology, stem cell research and genetics, has opened the gateway towards the discovery of brain repair therapies which can enhance mobility and cognition, giving quality of life and health to these children.

The National Information Center for Children and Youth with Disabilities (NICHCY): NICHCY is the national information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals. Our special focus is children and youth (birth to age 22). NICHCY provides information and makes referrals in areas related to specific disabilities, early intervention, special education and related services, individualized education programs, family issues, disability organizations, professional associations, education rights and transition to adult life.

Cerebral Palsy: Hope Through Research: Investigators from many arenas of medicine and health are using their expertise to help improve treatment and prevention of cerebral palsy. Much of their work is supported through the National Institute of Neurological Disorders and Stroke (NINDS), the National Institute of Child Health and Human Development, other agencies within the Federal Government, nonprofit groups such as the United Cerebral Palsy Research Foundation, and private institutions.

Scope: The disability organisation in England and Wales whose focus is people with cerebral palsy. Their aim is that disabled people achieve equality: a society in which they are as valued and have the same human and civil rights as everyone else. There's lots here to explore - information, facts, opinions, books, ways you can become involved.

Ontario Federation for Cerebral Palsy: A non-profit charitable organization of member groups with a mandate to address the changing needs of people in Ontario with cerebral palsy and other physical disabilities, recognizing the inherent dignity and rights of all individuals by assisting member groups in the development and provision of services and programs, advocating and promoting awareness, understanding and acceptance of persons with physical disabilities, encouraging and supporting research, education and programs related to cerebral palsy and other physical disabilities.

Cerebral Palsy Canada: One of the largest and most informative web sites on Cerebral Palsy. Full of information, services, discussions, books and many other resources. Links to all available programs in Canada.

UCP-Net: United Cerebral Palsy Afilliates: Use the page to find the United Cerebral Palsy Center or Afilliate in your area. Simply enter your State or ZipCode.

Cerebral Palsy Association of Western Australia: Adult services with a focus on adults with cerebral palsy and childrens services for two groups of children: Children prior to starting school may take part in the Early Intervention Programme which aims to maximise independence and participation for the pre-school child. For school-aged children, the Association offers support in the school, home and community. A respite service provides short-term accommodation for children to enable families to have a break from the extra pressures they face. At all times the needs of the individual child and his or her family are paramount, and all programmes are individually designed. Adult Services support people with cerebral palsy to live in the community. For example, a person with a disability may require support for independent living, leisure and employment. The Association facilitates a wide range of community options that support individual needs.

Cerebral Palsy of New Zealand: Even though a person with cerebral palsy requires specialised services their basic needs are the same as other people of the same age. Everybody has need for acceptance, dignity, security, affirmation, happiness and certain levels of self-responsibility and competence. The Cerebral Palsy Society has learnt that all these advances are possible and that when they are accomplished the quality of life experienced by all is enhanced.

North American Growth in Cerebral Palsy Project (NAGCPP): Children with Cerebral Palsy often do not grow the same as other children. Children with CP are often shorter and thinner than other children of the same age. We do not know if this is "normal," or if there could be a problem with nutrition or hormones, and so we are interested in discovering what is "just right" for a child with CP. The first step in understanding growth in Cerebral Palsy is to measure a large group of children with CP. This study is under way in six different medical centers in the United States and Canada.

United States Cerebral Palsy Athletic Association (USCPAA): The National Governing Body for competitive sports for individuals with cerebral palsy, traumatic brain injuries and survivors of strokes. USCPAA was formed in 1987 and is responsible for conduct and administration of approved sports in the United States. USCPAA formulates the rules, implements policies and procedures, conducts national championships in twelve sports, disseminates safety and sports medicine information and selects the athletes to represent the United States in international competition.

Cerebral Palsy and Deaf Organization (CPADO): CPADO's mission is to provide a website that welcomes those who share the combined challenge of cerebral palsy and deafness, and to reach out to others and to offer a place to ask questions, discuss topics, find out what's happening, or contribute personal experiences. Although some sections are still partly in progress, the list of links and resources alone is worth a visit to this site.

[Return to "Quick-Index" of Links & Resources for Cerebral Palsy]

General Information on Cerebral Palsy

Cerebral Palsy Information Central (CPIC): The information is geared toward individuals with CP, families affected by CP, and just those trying to learn more. Includes sections on causes of cerebral palsy indications and symptoms in infants and toddlers, myths about cerebral palsy, aging and cerebral palsy, relationships and disability, tips for overcoming communication impairments and other valuable resources.

Cerebral Palsy: A Guide for Care: From the Cerebral Palsy Program at the Alfred I. DuPont Instutute, this site gives a condensed version of the information available and an overview of material discussed in much more depth in the book, Cerebral Palsy; A Complete Guide for Caregiving, by Miller, Bachrach, et al, published by JohnsHopkins Press.

American Cerebral Palsy Information Center: Committed to eliminating all doctor/hospital caused cerebral palsy, Erb's palsy, and other birth injuries, and helping you cope with the challenges of caring for your special needs child, this site has news, support, treatment options and answers to frequently asked questions.

How Can I Help?: Information for Friends and Relatives of a Child with Cerebral Palsy.: When a child is diagnosed with cerebral palsy, the parents face many new emotional and physical demands. In the initial years they have to learn to cope with the special needs of their child. Parents also have special needs themselves which require special understanding and support from family and friends. This On-Line Booklet , reproduced on the World Wide Web with the kind permission of the The Cerebral Palsy Association of Western Australia, explains how relatives and friends can help.

UCP-Net: United Cerebral Palsy Afilliates: Use the page to find the United Cerebral Palsy Center or Afilliate in your area. Simply enter your State or ZipCode.

Cerebral Palsy - A Multi-Media Tutorial for Children and Parents: From the Children's Medical Center of the University of Virginia - a comprehensive network of health-care facilities dedicated to the care of children from birth through adolescence.

[Return to "Quick-Index" of Links & Resources for Cerebral Palsy]

Mailing Lists, Discussion Forums and Support Groups

CPParent - For Parents of Children with Cerebral Palsy: Here are located the archives of the mailing list discussion group, "cpparent@maelstrom.stjohns.edu", from March 1996 to the present. CPParent is a LISTSERV mailing list for discussions of issues relating to the parenting of children afflicted by Cerebral Palsy (CP). Children, as well as parents, are invited to join in the discussion. Discussion topics are relatively loose...anything that can help families affected by CP is welcome. Most any situation in your everyday life in which CP plays a significant role could be a topic for discussion. To subscribe to this ListServ discussion group, click here.

The C-PALSY List: This is one the largest lists on Cerebral Palsy and is subscribed to by adults, teens, and kids with cerebral palsy; parents, siblings, and caregivers; healthcare professionals, etc. Topics range from aging and cerebral palsy to daily living issues and problem solving, to medical treatments.

Adults With CP: This list is for adults over 17 with Cerebral Palsy. It is to discuss dealing with the everyday trials of any person with CP. Not so much the CP but dealing with everyday things with CP and disabilities. Posts will discuss sex, love, marriage, dating, relationships, work, jobs, school, common tasks, goverment issues, parents, siblings, having children, etc.

CPKids: This list is for children diagnosed with cerebral palsy or other disabilities. Age 7 or 8 through teen years are welcome. The idea behind this is for the kids to offer support to each other since they are going through a lot of the same issues. This list is monitored, but parents are also encouraged to keep an eye on what their children are posting.

[Return to "Quick-Index" of Links & Resources for Cerebral Palsy]

Alternative Treatments and Therapies for Cerebral Palsy

Quest for Children Foundation: This Non-Profit Foundation is dedicated to promoting public awareness, family support and to help provide financial assistance for alternative medical treatments - such as Hyperbaric Oxygen Therapy (HBOT) for children with cerebral palsy and other brain injuries from birth to eighteen years of age. Founded by parents of children with special needs. With their own experience and training in special education rules and regulations we are here to provide families with information that will help their children receive the free and appropriate education they are entitled to.

Yoga for the Special Child: A comprehensive program of yoga techniques designed to enhance the natural development of children with special needs. This style of yoga is gentle and therapeutic - safe for babies and children with Down Syndrome, Cerebral Palsy, Microcephaly, Autism and other developmental disabilities. These methods can also provide an effective treatment for children diagnosed with Attention Deficit Disorder, ADHD and Learning Disabilities.

Hyperbaric Oxygen Chamber Treatment Centers: Lists locations for about Hyperbaric Oxygen Therapy (HBOT) in the United States, Canada, The United Kingdom, Australia and South Africa, with contact information and treatment cost for each center.

Ocean Hyperbaric Center: The Ocean Hyperbaric Center is believed to be the original center specializing in the neurological applications of hyperbaric oxygenation and the potentially recoverable brain. Referral services are on a worldwide basis. Many of the patients seen here are those in which the attending physicians have said that there is no hope. Located in Lauderdale-by-the-Sea, Florida.

Cerebral Palsy and Hyperbaric Oxygen Therapy (HBOT): HBO therapy is a medical treatment that uses the administration of 100 percent oxygen at controlled pressure (greater than sea level) for a prescribed amount of time - usually 60 to 90 minutes. HBO therapy is commonly used to treat conditions such as burns and difficult healing wounds. Documentation now exists that inducates that HBO therapy can dramatically improve some CP symptoms. HBO therapy facilitates healing in these conditions by increasing the amount of oxygen in the blood by up to 2000 percent, depending on the treatment depth. This in turn dramatically increases the amount of oxygen at the cellular level.

Cerebral Palsy: Alternative Therapy Resources & Support: A good sampling of resources for and information on HBO Therapy, Amino Acid Therapy, personal testimonials and support groups.

The Conductive Education Information Home Page: Conductive education is a unique system of teaching and learning for children with motor disorders such as cerebral palsy and spina bifida. It is designed to improve motor skills and increase independence of many aspects of common living. It is not a cure, but a method of exercises and education which are broken down into basic functional movements. The exercises are performed intensively (5 hours per day, 5 days per week) in small groups which promotes interactivity and fun.

Conductive Education: The Focus Conductive Education programme offers a holistic approach of pre-school learning. It incorporates a range of activities that encourages the growth of the child's motor skills, cognition, as well as their social and emotional development. Ultimately the goal of the programme is to enable the child with a motor disorder to become an active member of society. Today many people from all over the world are attending Conductive Education classes. The programme was the brain child of Hungarian born Professor Andras Pėto.

The Alexander Trust (Dolphin Therapy Watch): Dolphin therapy started in the early 70's by Dr Betsy Smith in Florida Keys, USA. She started interacting with dolphins and young people suffering from autism who have extremely limited attention span which will restrict their learning potential. The most common users of this therapy are Cerebral Palsy, Downs syndrome, Autism and people with severe depression. The therapy is very much a compliment to traditional therapy, not a replacement, it does not prevent the diseases or disability, it however can sufficiently increase attention and motivation, this can sufficiently speed up a child's behavioural problems up to the next stage of learning.

[Return to "Quick-Index" of Links & Resources for Cerebral Palsy]

Educational Concerns and Programs for Cerebral Palsy

[Links coming soon]

[Return to "Quick-Index" of Links & Resources for Cerebral Palsy]

Pharmacology for CP and Medical Issues

Clinical Trials for Cerebral Palsy: Government- sponsored clinical trials overseen by the National Institutes of Health (NIH). Trials include medications as well as alternative or innovative therapies. For more information, you may want to check the box to show all trials, including those no longer recruiting patients.

CenterWatch: Cerebral Palsy Clinical Trials: A private company, CenterWatch provides patients and their advocates with a variety of information services about clinical research. The web site provides an extensive list of IRB approved clinical trials being conducted internationally for various illnesses. Many of these trials may be appropriate for your participation. Also lists promising therapies newly approved by the FDA (Food and Drug Administration).

Cerebral Palsy Medications: A great directory that lists several informative websites for each of the following medications used for Cerebral Palsy: Acetazolamide, Carbamazepine, Cerebyx, Clonazepam, Dilantin, Gabapentin, Lamotrigine and Topiramate.

An Overview of Cerebral Palsy and Evolving Trends in Management: A good article by Daniel E. Shanks, M.D , a Pediatric Neurologist with Nemours Children's Clinic. Scroll down to the "Management" section for the information on pharmacological and surgical treatments.

Oral Medications For Spasticity Management: The use of oral medications for treatment of spasticity may be very effective. Benzodiazepines, baclofen, dantrolene sodium, and tizanidine are the most widely used agents for reduction of spasticity. The challenge is to establish a treatment plan that will strike a vital balance between improved function, patient satisfaction, and possible side effects. At high dosages, oral medications can cause unwanted side effects that include sedation, as well as changes in mood and cognition.

Botox Injections for Children with Cerebral Palsy: In a study of 30 children with cerebral palsy, Botox injections improved muscle function in the children's arms within one month. The patients all had hemiplegia, a form of cerebral palsy in which one side of the body is impaired by muscle stiffness. Previous research has shown Botox injections can help children whose cerebral palsy has left them unable to walk. The current findings were published in the September issue of The Journal of Pediatrics.

More Questions About Steroid Safety for Premature Babies: Until recently, dexamethasone was often used to boost the lung health of premature infants who were on ventilators or who were at risk of developing severe lung disease. But in the last 2 years, several reports have suggested that the drug - particularly early, high doses - may cause long-term developmental side effects, including an increased risk of cerebral palsy. Since then, doctors have been investigating the use of other steroid drugs to see if the long-term damage can be avoided.

[Baclofen] Drug Pump Helps Cerebral Palsy Patients: Oral drugs, including baclofen, are used to treat spastic hypertonia, but these drugs have side effects and do not help many patients. Delivering baclofen continuously to the spinal canal via a surgically implanted pumphas been shown to reduce spasticity in children with cerebral palsy. Dr. Jay M. Meythaler of University of Alabama School of Medicine in Birmingham and his colleagues, in the first study to evaluate this technique in adults with cerebral palsy, tested the pump in 13 patients, aged 13 to 43, who had spastic hypertonia that had not been helped by oral medications.

Infection, Inflammation, Cytokines and Cerbral Palsy: Therapeutic administration of interferon-a , a cytokine, to young children has been followed by development of spastic diplegia, a form of cerebral palsy (CP). A number of authors have reported observations linking intrauterine infection with ultrasonographic or histopathologic evidence of periventricular white matter lesions in premature infants, an important predictor of CP, and it has been postulated that cytokines may be mediators of this injury.

[Return to "Quick-Index" of Links & Resources for Cerebral Palsy]

Assitive Technology, Mechanical Aids and Other Devices for Cerebral Palsy

DREAMMS for Kids, Inc. (Developmental Research for the Effective Advancement of Memory and Motor Skills): A non-profit parent and professional service agency, that specializes in Assistive Technology (AT) related research, development, and information dissemination. Committed to facilitating the use of computers, assistive and adaptive technologies, and quality instructional technologies for students and youth with special needs in schools, homes, and the community.

Technical Assistance Alliance for Parent Centers: Funded by the U.S. Department of Education, Office of Special Education Programs, to serve as the coordinating office for the Technical Assistance to Parent Projects beginning October 1, 1997, The Alliance is a new innovative project which focuses on providing technical assistance for establishing, developing, and coordinating Parent Training and Information Projects under the Individuals with Disabilities Education Act. The Alliance offers a variety of resources to assist the Parent Centers as they move into the 21st Century. This will further strengthen the Parent Centers' ability to effectively serve the families in their community whose children have disabilities.

National Early Childhood Technical Assistance System (NECTAS): NECTAS is a national technical assistance consortium working to support states, jurisdictions, and others to improve services and results for young children with disabilities and their families and is composed of the following six organizations: Frank Porter Graham Child Development Center at the University of North Carolina at Chapel Hill; Center on Disability Studies at the University of Hawaii at Manoa; Federation for Children with Special Needs, Boston, Massachusetts; Georgetown University Child Development Center, Washington, D.C.; National Association of State Directors of Special Education (NASDSE), Alexandria, Virginia; and Zero to Three, Washington, D.C. Each of these partners bring specialized expertise to NECTAS activities.

Alliance for Technology Access (ATA): With an awareness of and access to appropriate technology, a person with a disability no longer has to remain hidden away in a back room, isolated and unproductive. The power of technology to neutralize limitations and support participation in the mainstream of society is phenomenal. Yet, most of the 53.9 million Americans with disabilities who could benefit from technology have neither the awareness or the access. The Alliance for Technology Access (ATA) is addressing this problem. It now reaches over 300,000 people with disabilities and their families each year. Over the past 13 years, ATA has assisted almost 2.5 million Americans with disabilities. Although this reflects a significant impact, we have reached only a fraction of those that need service and support.

ABLEDATA: A national database covering information on assistive technology and rehabilitation equipment. The ABLEDATA database contains information on more than 27,000 assistive technology products with detailed descriptions of each product including price and company information. The database also contains information on non-commercial prototypes, customized and one-of-a-kind products, and do-it-yourself designs. Assistive technology fact sheets and consumer guides are available.

Assistive Technology and Augmentative Communication: Includes handouts describing the general philosophical basis for using augmentative communication and assistive technology with young children, directions for adapting existing products, books and products, selected vendors and internet resources.

WheelchairNet: A web-based resource for people who have a common interest in (or in some cases a passion for) wheelchair technology and its improvement and successful application. Everything you need to know about buying, paying for, using and maintaining wheelchairs. Discussion Groups and answers to frequently asked questions.

[Return to "Quick-Index" of Links & Resources for Cerebral Palsy]

Treatment Centers, Clinics & Physicians

UCP-Net: United Cerebral Palsy Afilliates: Use the page to find the United Cerebral Palsy Center or Afilliate in your area. Simply enter your State or ZipCode.

UCP-Net: United Cerebral Palsy Afilliates: Use the page to find the United Cerebral Palsy Center or Afilliate in your area. Simply enter your State or ZipCode.

Ability Camp: A year round facility established in 1995 that provides Conductive Education as well as Hyperbaric Oxygen Therapy sessions for children with motor disorders such as Cerebral Palsy, Hydrocephalus, Brain Injury, etc. Located near Picton, in Ontario, Canada.

Center for Cerebral Palsy Spasticity: St. Louis Children's Hospital: Of all the surgical procedures currently performed on patients with cerebral palsy, selective dorsal rhizotomy has undergone more thorough scientific scrutiny than any other (including orthopaedic). Accumulated evidence and the Center's experience indicate that SDR is an excellent option for selected patients with spastic CP.

Euromed Rehabilitation Center: The rehabilitation of children and teenagers with a new method which applies the Adeli Suit - an adapted astronaut's space uniform - to treat the Cerebral Palsy Disorder, has been carried out in the Polish town Mielno since April 1994. The equipment is specifically intended for rehabilitation of motor parts of the body affected by the most serious neurological illnesses.

[Return to "Quick-Index" of Links & Resources for Cerebral Palsy]


The Cerebral Institute of Discovery: This site explores how and why the human brain functions (or not) as it does. You will find here a comprehensive collection of neurological resources, from brain research studies and pharmacology to treatment options and assistive technologies for those with neurological disturbances. The Institute's aim is to provide a conduit between the professional and private communities and to reach those families who need this information the most, without any commercialism, advertising, or hype. Check out the Cerebral Palsy section.

Alliance for Cerebral Palsy Law: Children are born with birth defects every day. But it's possible that some of those birth defects, like Cerebral Palsy(CP), could have been prevented. Sometimes Cerebral Palsy is due to an accident in the labor and delivery of a child. You deserve to know if your child's disability is due to negligent care and you have the right to investigate its cause and know the options you have.

Lantern Books: Publishes books on alternative medicine, natural healing, spirituality, vegetarianism, and animal advocacy. Some of their titles include Iscador: Mistletoe in Cancer Therapy by Christine Murphy, Dr. Mom's Quick Reference Guide to Natural Healthcare at Home by Kathy Duerr, Findhorn Flower Essences by Marion Leigh, and A Remarkable Medicine Has Been Overlooked by Jack Dreyfus.