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Resources

Camps
Camp MITIOG

Online Groups & Message Board
Here are a few palces on the web that you can join in on discussions with others with spina bifida and/or parents of children with spina bifida.
Baby Center – Spina Bifida Kids

Cafe Mom –
Spina Bifida Moms

Daily Strength – Spina Bifida Support Group
Yahoo – Spina Bifida Central
We Connect Now
– Website for College Students with Disabilities

Education / Health
Missouri Developmental Resource Center
The Allen Institute for Research on Learning, Information & Technology
MPACT – Parent Training & Education
Division of Special Education
UMKC Institute for Human Development
Exceptional Parent
National Dissemination Center for Children with Disabilities
United Healthcare Children’s Foundation

Assistive Technology
Coalition For Independence
The Family Center on Technology and Disability
Missouri Assistive Technology

Recreation
National Sports Center for the Disabled
Rehabilitation Institute of Kansas City
YMCA of Kansas City—Challenger baseball, football and soccer
KC Pioneers – Track and field / basketball – contact Mike or Patty Morrisey at (816)806-8132 or mmorrisey@ hotmail.com

Informational Sites
CDC – National Spina Bifida Program
Children and Adults with Spina Bifida
March of Dimes
Chiari Malformation

Fetal Surgery for Spina Bifida
MOMS (Management of Myelomeningocele) Study

Orthopedic Sites
Shoes

Hatchbacks

Keeping Pace

Non-Profit Organizations
Inspiration Through Art
KEEN Kansas City

Books
Super Sticks
Don’t call me special: a first look at disability. by Pat Thomas (picture book)
How it feels to live with a physical disability by Jill Krementz
The storm by Mark Harshman (Picture book about a boy in a wheelchair who faces a tornado by himself and saves the lives of the horses on the farm)

Regional Spina Bifida Groups
Spina Bifida St. Louis
Spina Bifida Nebraska

Local Spina Bifida Clinics
Kansas

Special Health Care Services Spinal Cord Clinic
VCSF-SPC
848 N. St. Francis
Wichita, KS 67214
Phone: 316-688-2021

Missouri
Pediatric Specialty Clinic
1101 Hospital Drive
Columbia, MO 65212
Phone: 573-884-3952
Website: muhealth.org

Children’s Mercy Hospital
Spinal Defects Clinic
2401 Gillham Road
Kansas City, MO 64108
Phone: 816-234-3005
Website: childrensmercy.org

Cardinal Glennon Children’s Hospital
Myelomeningocele Clinic
1465 South Grand Blvd.
St. Louis, MO 63127
Phone: 314-268-4178
Web site: cardinalglennon.com

Shriner’s Hospital for Children
2001 S. Linberg Blvd.
St. Louis, MO 63131
Phone: 314-432-3600
Website: shrinershospitalsforchildren.org/Hospitals/Locations/StLouis.aspx

 

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