This Cerebral Palsy Help Center contains beneficial information for parents of children with Cerebral Palsy. We’ve included everything from “What is Cerebral Palsy” , and “Can Stem Cells help my child?”, to “Where can I find cute shoes that fit over my child’s AFO’s?”.
The information and resources listed here is RFTS parent and medical advisory board “approved” so you can have confidence we won’t include any harmful or misleading information.
Cerebral Palsy Information Resources – U.S.
- CDC > Developmental Disabilities > Cerebral Palsy
- NINDS Cerebral Palsy Information Page
- MedlinePlus: Cerebral Palsy
- American Academy for Cerebral Palsy and Developmental Medicine
- Child Neurology Society
- Cerebral Palsy Foundation
- Cerebral Palsy Research Network
- National Rehabilitation Information Center
- American Academy of Neurology
- National Institute on Disability and Rehabilitation Research
National Institutes of Health Research (NIH) Overview on diagnosis, additional symptoms, associated health concerns, treatments and research on cerebral palsy. The NIH also runs a Government sponsored initiative providing up-to-date information on stem cells in regenerative medicine.
Other Cerebral Palsy Research Resources – U.S. and Global
- CPDailyLiving (U.S.)
- CAN Child for Childhood Disability (Canada)
- Cerebral Palsy Alliance Research Foundation– (Australia)
- Cerebral Palsy Alliance – (Australia)
- Indian Cerebral Palsy – R.P. Shah Memorial Trust for Children with Disabilities (India)
- NeuroDevNet The first trans-Canada initiative dedicated to studying children’s brain development from both basic and clinical perspectives.
- Neural Plasticity Research – Diffusion Tensor Imaging in PVL (U.S.)
Cerebral Palsy Clinical Trials
Current information on legitimate, registered clinical trials
Adaptive Sports, Recreation and Camps for Kids
- Adaptive Sports and Recreation Resources 2018 (AACPDM)http://www.aacpdm.org/UserFiles/file/handouts/am18/ich/IC22-Adaptive-Sports-Programs-Resources.pdf
- Cerebral Palsy International Sports and Recreation Association (CPISRA)
- Adaptive Adventures
- Access Anything
- Special Olympics
- Paralympic Sports
- National Center on Physical Activity & Disability (lots of local & regional adapted sports links)
- Victory Junction – No cost camp for kids with a variety of challenges (North Carolina)
- Camp Independence – A sports camp specifically for kids with Cerebral Palsy (Missouri)
- Adaptive Skiing Programs – “Stars of Tomorrow” Youth Ski Camps
- Steamboat Stars Adaptive Recreation (Colorado)
- Adaptive Aquatics – waterskiing, wake boarding & more (Alabama)
Childhood Stroke & Hemiplegia Information
- International Alliance for Pediatric Stroke
- Pediatric Stroke Program at Children’s Hospital of Philadelphia
- HemiHelp.org (UK)
- Intensive Constraint Induced therapy (CIMT) and Bimanual therapy (HABIT) have proved statistically effective in restoring use of the upper extremity of patients with hemiparesis. The following sites have done the research in these areas.
Adaptive Bicycles, Adaptive Clothing & Shoes
- Freedom Concepts
- Vendor list of adaptive clothing
- Hatchback Shoes
- Keeping Pace Children’s Footwear
Educational Resources and Assistive Technology
- US Dept. of Education: Office of Special Education and Rehabilitative Services
- Wrightslaw Special Education Law and Advocacy
- US Dept. of Education: IDEA
- National Dissemination Center for Children with Disabilities > Research
- National Dissemination Center for Children with Disabilities > State Resources
- Best iPad Apps for Kids with Disabilities
- Leveling the Playing Field with Apps
- Dragon Naturally Speaking & More info
- Family Center on Technology and Assistive Technology
Other Helpful Links and Patient Assistance
- United Cerebral Palsy
- Canine Companions for Independence – Service dogs
- Pathways Awareness Foundation
- Prescription Drug and Patient Assistance Programs
- Medicaid Waiver Information
- Financial Help for Prescriptions and more – NeedyMeds
- March of Dimes
- Easter Seals
- Cerebral Palsy Kinetic Connections
Additional Information about Stem Cell Research
- CP Stem Cell Fact Sheet – Ruff, Wilcox, Fehlings
- CP Stem Cell Guide for Parents – Ruff, Wilcox, Fehlings
- Neural Repair and Regeneration – Canada/Dr. Fehlings
- Stem Cells Inc.
- Canadian Institutes of Health ResearchThe CIHR Stem Cell Research provides up-to-date information on stem cell governance and legislature in Canada.
Global 16×9 Selling Hope
This is an excellent investigative journalism piece on the “trade” of “stem cell tourism”
CP Registry – U.S.
Also, be sure to consider being a part of the cp registry – a wonderful initiative undertaken by the Rehabilitation Institute of Chicago, in conjunction with Northwestern University, the University of Chicago, La Rabida and Children’s Memorial Hospital.
We’d love to hear from you if you know of more resources we should include. If you have a suggestion, please email us at [email protected] and include the website link, article, video or source you would like us to consider adding.