Education & Resources
The Child Neurology Foundation serves pediatric patients with neurologic disorders through advocacy, education, research, and support initiatives. Their website has a wealth of helpful information about neurologic disorders throughout childhood into adulthood, resources, and information about clinical trials.
www.childneurologyfoundation.org/patients-or-caregivers
The Disorder Directory is a great starting point to learn about different disorders from experts as well as to find disorder-specific resources.
www.childneurologyfoundation.org
Specific Conditions
Brain and Spinal Cord
Great informational teaching site from concussion to more severe brain injuries.
www.vivacare.com/childneurologysolutions/HealthTopic/Brain_and_Nervous_System
Abusive Head Injury
www.childneurologyfoundation.org
Brain Tumors
Excellent starting point to learn about brain tumors and treatment options.
www.cancercenter.com
Chiari Malformation
Encephalopathy
Epilepsy Foundation
Hydrocephalus
Excellent website that has many helpful resources for parents as well as a comprehensive knowledge section that includes extensive review of management of hydrocephalus, shunts and complications.
Neurology Glossary
www.vivacare.com/ChildNeurologySolutions/HealthTopic/Neurology_Glossary
National Headache Foundation
Neuroscience for Kids
Although created for kids and teachers, these are very helpful websites for all ages.
Brain organization – https://faculty.washington.edu/chudler/nsdivide.html
Autonomic nervous system – https://faculty.washington.edu/chudler/auto.html
Pediatric stroke
Post-head injury autonomic problems
www.medscape.com/article/325994-overview
Resources and support
Minnesota Brain Injury Alliance
Minnesota Brain Injury Alliance is a nonprofit dedicated to providing advocacy and direct service to individuals affected by brain injury.
2277 Highway 36 West,
Suite 200 Roseville,
MN 55113-3830
Phone: 612-378-2742
Toll Free: 1-800-669-6442
Fax: 612-378-2789
Email:
info@braininjurymn.org
URL: www.braininjurymn.org
PACER
Nonprofit providing education and advocacy for children with disabilities.
Minnesota: 1.800.537.2237 or 952.838.9000
USA: 888.248.0822
Fax: 952.838.0199
PACER Center, Inc.
8161 Normandale Blvd.
Bloomington, MN 55437
URL: www.pacer.org
Kane Education Law
Margaret O’Sullivan Kane is an expert in educational law, based in Saint Paul, MN.
1032 Grand Avenue Suite 202,
Saint Paul, MN 55105
Phone: 651 222-8611
Simon Technology Center
A part of PACER, the Simon Center is a tremendous resource for assistive technology to help children with disabilities participate more independently whether at home or school. Along with getting a technology assessment, there are other resources as well including a lending library and individual training sessions.
8161 Normandale Blvd.
Minneapolis, MN 55437-1044
Phone: 952-838-9000
Fax: 952-838-0199
URL: www.pacer.org
Other Resources
If your child may need to go to the emergency department or get admitted to the hospital or you sometimes use out-of-home respite services, please complete the following form. It can be very helpful in making these stays as comfortable as possible for your child. It was created by EA Perkins (My Health Passport for Hospital/Clinic Visits, 2011).
Please take a look at the Simon Technology Center resource list for clinical care, technology resources, conferences and even links to online stores for assistive technology devices and toys
http://www.pacer.org/stc/links.asp
