Other Useful Resources

General Resources

Embedding Health Outcomes in the Individualized Education Program – This 40-minute video recording provides information and specific examples of health related goals for an IEP. This recording is available, at no cost, from the Wisconsin Department of Public Instruction web site.

Children’s Hydrocephalus Support Group – This new Pacific Northwest regional support group meets every other month in person. The Children’s Hydrocephalus Support Group was created to give parents of children with hydrocephalus an opportunity to learn from one another and become better advocates for our children through education about hydrocephalus, treatment, and therapies. It’s focused on parents and children, but adults are also welcome. This site also features an online support forum that you can join to get support from the group’s members, so you don’t need to reside in the Pacific Northwest to benefit from its activities. People from Virginia, Alaska, and Arizona, for example, are members of this group under its website’s “Support” area.

Dandy-Walker Alliance – This alliance is an all-inclusive organization including people directly and indirectly affected by Dandy-Walker who share an interest in educational, informational activities and supporting nonpartisan research to increase public awareness Dandy-Walker syndrome.

FollowMe – This site is a one-stop shop designed to help with web-based management of medical records. FollowMe is secure and user-friendly.

Hydrocephalus Clinical Research Network (HCRN) – The Hydrocephalus Clinical Research Network (HCRN) has been established by philanthropic funding to conduct multi-institutional research (clinical trials and observational studies) on pediatric hydrocephalus.

The mission of the Hydrocephalus Clinical Research Network is to dramatically improve the lives of children suffering from hydrocephalus by conducting important, and field-changing, multi-center clinical research.

International Federation for Spina Bifida and Hydrocephalus – The International Federation for Hydrocephalus and Spina Bifida (IF) is the worldwide umbrella organization (NGO) for hydrocephalus and spina bifida. It was established in 1979. Today the IF’s membership includes national umbrella organizations for hydrocephalus and spina bifida in over 40 countries.

National Institutes of Health Hydrocephalus Links – This list of hydrocephalus links is put together by the National Institutes of Health, in conjunction with Medline.

Neurosurgery://On-Call: Hydrocephalus FAQ – This provides a list of frequently asked questions about hydrocephalus (and their answers), from the official site of the American Association of Neurological Surgeons and Congress of Neurological Surgeons.

Spina Bifida Association – This site covers everything from vital information about the B-vitamin folic acid for women affected by a neural tube defect to information who might become pregnant, to strategies to help improve the quality of life for people living with spina bifida.

DrugWatch.com – DrugWatch’s site features a comprehensive list of drugs and medications that are currently on the market, or were previously available worldwide.


Medical Centers & Doctors

The American Board of Pediatric Neurological Surgery – Use this site to find out whether your neurosurgeon is a ABPNS diplomate, and learn about the criteria for certification.

Beth Israel Medical Center – The INN’s official site provides general information about pediatric and adult neurosurgery, along with specific informantion on hydrocephalus and associated disorders.

Carolina Neurosurgery & Spine Associates – Pediatric Neurosurgery – This practice serves as a regional referral base for childhood neurosurgical problems, under the direction of pediatric neurosurgeons Scott McLanahan, M.D., Michael D. Heafner, Sr., M.D., and Martin M. Henegar, M.D.

The Children’s Brain Tumor Foundation – Founded in 1988 by a group of dedicated parents, physicians and friends to improve the treatment, quality of life, and the long term outlook for children with brain and spinal cord tumors through research support, education, and advocacy to families and survivors.

Children’s Hospital of Atlanta – This site presents an excellent overview of hydrocephalus diagnosis and treatment. The Neurosurgery Program is under the direction of Rodger Hudgins, M.D., a pediatric neurosurgeon.

Columbia Presbyterian Medical Center: Pediatric Neurosurgery – This site provides basic information about hydrocephalus and describes services offered at CPMC, which is under the direction of pediatric neurosurgeon Neil Feldstein, M.D.

Hydro-KIDS – This site sponsored by shunt manufacturer, Codman, is designed to be a comprehensive information source for kids, parents and caregivers about pediatric hydrocephalus (what it is, treatment, follow-up resources). Its also lots of fun and games around benny the Bear, one of the only bears with a shunt!

Mayo Clinic Department of Neurosurgery – This site features an overview of the clinic’s services, a list of doctors, an online appointment booking services, and more.

Neurosurgeons for Kids – The site of Orlando, Florida, neurosurgeon Eric R. Trumble provides information about hydrocephalus, patient information forms, and links to other resources.

St. Christopher’s Hospital for Children – This site provides detailed information about hydrocephalus and shunts. The program is under the direction of Joseph H. Piatt, M.D.

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