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We are here to empower you as parents and providers to be the best that you can be. We can do this through providing you with information and suggestions from our personal experiences. We are not medical professionals, but are essential to our children's future, we are PARENTS!
Here we have tried to list relevant websites and written material that may assist you with your child.  This segment will be updated regularly. If you have a question that is not answered here, please contact us.
The information contained in this website is based on information relevant to U.S. Citizens. We will be adding information as needed for those families that reside in other countries, including developing countries.
Updated: 1/19/06
Reading Recommendations:
Living With Spina Bifida: Speaking Out About My Disability by Larry E. Appelmann.
Larry Appelmann talks about his experiences, including the past surgeries he has had. He also mentions his family and how important they are to him. Living with Spina Bifida: Speaking Out About My Disability contains 13 chapters, including a prologue and a bibliography, which you normally would not see in an autobiography but he included one because there were a lot of things related to his disability that he wanted to include in his autobiography. *You can purchase this book at both Amazon.com and Barnesandnoble.com.
Indiana Specific Resources Disability Laws

Special Summer Camps

Indiana Dept. of Education

The Indiana's Governor Planning Council for People with Disabilities

Indiana Protection & Advocacy Services

BADF (Buckmasters American Deer Foundation Disabled Hunts)-Hunts are made possible at no charge (or reduced rate) for disabled youths and adults. Superb resource and one worth looking into!!!! Help Create Wonderful Memories for your child!

Indiana Medicaid

EquiVenture, Inc. (Therapeutic Horse Back Riding)

Spina Bifida Association of Central Indiana - Indianapolis

Spina Bifida Association of Northern Indiana - Elkhart

Make A Wish Indiana

Indiana Protection & Advocacy Services

Office of Civil Rights (U.S. Dept. of Human Svcs.)

Arnold Chiari Malformation Nationwide Disability Organizations

World Arnold Chiari Malformation Assoc.

Symptomatic Chiari Malformation

How to Treat Syringomyelia Related Scoliosis in Children

Chiari, Syringomyelia, Scoliosis, And Surgery....


Partners for Youth With Disabilities - Programs to assist adolescents & older children with various issues. Has such programs as Mentor Match, Leadership Programs, etc. (MA area only)

Hydrocephalus Urology

Hydrocephalus Association

Hydrocephalus and Shunts in the Person with Spina Bifida-Coming Soon

Sports & Shunts: Who Can Play?

National Hydrocephalus Foundation (Lakewood, CA)

FREE BOOK - Understanding Hydrocephalus (Contact)

An Overview of Transitions into Adolescence

Urological Care & Management


Adolescence / Puberty Misc.

Precocious Puberty in Children Who Have Spina Bifida with Hydrocephalus

Transitions Into Adolescence-Coming Soon

Health Care Issues For Adults with Spina Bifida

Living w/Chronic Pain


Spina Bifida Chapters

Spina Bifida Assoc. of America

Tethering Spinal Cord

Make A Wish

Mobility Internet Resources

Hip Function and Ambulation

National Organization for Rare Disorders

International Federation for Spina Bifida and Hydrocephalus

Social & Family Issues Information for Families Residing in Developing Countries

Depression and Anxiety in Individuals with Spina Bifida


Sports & Shunts: Who Can Play?

Living w/Chronic Pain

When A Sibling Is Different

Abortion Of Disabled Babies Increasing at Alarming Rate

Secondary Impairments in Young Adults with Spina Bifida

Cognitive Status of Young Adults with Spina Bifida

Medical Model vs Social Model - Adapted by the Chicago Institute of Disability Research


Guidelines for the Management of Hydrocephalus and Spina Bifida in District Hospitals

A Protocol for the Management of Neurogenic Bladder for Children in Developing Countries



NORD's Medication Assistance Program



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