Related Sites

Discussion

• Hypotonia Message Board at parentsplace.com
• Hypotonia Hope email-list / Yahoo group.
• "Our Special Needs Children" email-list / Yahoo group.
• The Myopathy e-mail list
• The Nemaline e-mail list
• The neurology forums at Harvard
• Strength-L Discussion List Home Page
• Giovanni Naso's Muscular Dystrophy page which includes Telling The Kids and instructions for participating in the MD-List@Basix.COM

Information

• Hypotonia
  • United Kingdom Congenital Hypotonia Website
  • National Organization for Rare Disorders
  • US Office of Rare Diseases
  • Muscular Dystrophy Associations:
    • USA
      Muscular Dystrophy Association
      3300 E. Sunrise Drive
      Tucson, AZ 85718
      1-800-572-1717
      520-529-5300
      Web Site: http://www.mdausa.org/
      E-Mail Address: mda@mdausa.org
      
    • Canada
    • Australia
  • The Nemaline Myopathy web site
  • The Congenital Myopathy Site
  • United Cerebral Palsy Association
  • Ehlers-Danlos Syndrome
  • The Hypermobility Syndrome Association
  • The Carbohydrate-Deficient Glycoprotein Syndrome Family Network, Inc.
  • The Dyspraxia Foundation
  • Marinesco-Sjogren Syndrome
  • Barth Syndrome Foundation
  • Van Lohuizen syndrome (Cutis Marmorata Telangiectatica Congenita (CMTC) ) (Site is in Dutch and English)
  • Contact-a-Family fact sheet on living without a diagnosis
  
  

• Disabilities

  • Band-Aids & Blackboards: When Chronic Illness...or Some Other Medical Problem Goes to School
  • Federation for Children with Special Needs
  • ParentsPlace.com has good information for parents of disabled children, including a chat board about hypotonia
  • Rett Syndrome Research Foundation
  
  

• Language/Speech/Hearing

  • The Kaufman Children's Center for Speech and Language Disorders includes:
    • The Kaufman Speech Praxis Test For Children
    • Ideas on encouraging language
  • The American Speech-Language-Hearing Association
  • Animated American Sign Language Dictionary
  • Apraxia Kids Home Page
  • Developmental Verbal Dyspraxia
  
  

• Learning Disabilities

  • Learning Disabilities Online includes:
    • Accommodations and modifications for students with handwriting problems and/or dysgraphia by Susan Jones, M.Ed.
    • Assistive Technology Resources - Keyboarding
    • Assessing Test-Taking Skills by Thomas E. Scruggs, Ph.D. and Margo A. Mastropieri, Ph.D.
  • NLDline - Nonverbal Learning Disorders Online
  • NLD on the Web!
  
  

• Autism

  • Asperger's Disorder Homepage

Personal

• Being Ben's Momma
• Maddie-N-Me
• Melissa's Page
• Ryan's Page
• Charlie's Home Page
• Nicky's Homework on Congenital Myopathies
• Mandi's Macrocephaly-CMTC Site