Spinal Muscular Atrophy Resources and Publications

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Spinal Muscular Atrophy Publications

Books, articles, and websites with valuable information for SMA patients:

• SMA Overall
  • A Family Guide to the Consensus Statement for Standard of Care in Spinal Muscular AtrophyPublished by The Patient Advisory Group of the International Coordinating Committee (ICC) for SMA Clinical Trials
  • Consensus Statement for Standard of Care in Spinal Muscular AtrophyPrepared by the Standard of Care Committee for Spinal Muscular Atrophy, a standing committee of the International Coordinating Committee for Spinal Muscular Atrophy
  • Special Considerations in SMA InfantsFrom the University of Utah School of Medicine
  • Living with SMABy the SMA Clinical Research Center at the Neurological Institute of New York and Columbia University
  • Diagnostic Testing and Care of New SMA Patients
    Joint publication of Translational Research in Europe for the Assessment and Treatment of Neuromuscular Diseases (TREAT-NMD) and the International Coordinating Committee (ICC). For copies in other languages, click here.
• Pulmonology and Respiratory
  • Management of Patients with Neuromuscular Diseases (2004)
    By John R. Bach, M.D., The University of Medicine & Dentistry of New Jersey
  • Noninvasive Mechanical Ventilation (2002)
    By John R. Bach, M.D., The University of Medicine & Dentistry of New Jersey
    Click here for information about how to order
  • Respiratory Aids Offer Hope for Neuromuscular Disease (2006)
    By John R. Bach, M.D., The University of Medicine & Dentistry of New Jersey
  • Respiratory Care of SMA and Choices
    By Mary Schroth, M.D., University of Wisconsin Children’s Hospital
  • Respiratory Information from the University of Utah School of Medicine
  • Respiratory Care Options For Children With Neuromuscular Weakness
    Presentation by Mary Schroth, M.D. at Nationwide Children’s Hospital, Columbus, Ohio
  • FightSMA Blog posts tagged “pulmonology”
• Nutrition and Metabolism
  • Nutrition
    From the University of Utah School of Medicine
    • General Nutrition Guidelines for SMA Children
    • Guidelines for Gastrostomy Tube Feeding for Infants with SMA type I
    • Nutritional Care Guidelines for Children with SMA during Acute Illness or Fasting
    • Nutritional Care Guidelines for Adults with SMA during Acute Illness or Fasting
    • Peri-operative Nutritional Care Guidelines
  • Nutrition Issues in SMA
    Lecture by Mary Marcus, MS, RD presented at the SMA Family Education Day held at the University of Wisconsin on August 15, 2009. (Scroll down to section “Spinal Muscular Atrophy (SMA) Lecture Series”)
  • FightSMA Blog posts tagged “nutrition”
• Orthopedics, Physical Medicine, and Physical Therapy
  • Exercise
    From the University of Utah School of Medicine
  • FightSMA Blog posts tagged “exercise”
  • Orthopedic
    From the University of Utah School of Medicine
  • FightSMA Blog posts tagged “orthopedics”
• Cardiac
  • FightSMA Blog posts tagged “cardiac”
• Equipment
  • SMA Medical Supply
    A medical supply company founded by an SMA family to server the specific needs of SMA families. The information on this website is not to be used in any way to replace the advice or instruction of a licensed medical professional.
• Other
  • CDC Growth Charts for Children with Special Health Care Needs
    The purpose of this module is to describe some of the effects that special health care needs can have on growth and to illustrate how the CDC Growth Charts can be used with children with special health care needs.

Other Resources / Information on Spinal Muscular Atrophy:

Fight SMA was created to be a resource for those
interested in learning more about spinal muscular atrophy (SMA). In addition to this site, there are a number sources which can provide you with valuable information about SMA. We encourage you to learn as much as possible by visiting the following sites.

• National Institutes of Neurological Disorders and Stroke (NINDS)
• National Institutes of Health (NIH)
• The SMA Project
• National Organization for Rare Disorders, Inc. (NORD)
• Muscular Dystrophy Association (MDA)
• Families of SMA
• SMA Foundation
• Stanford University
• PubMed Central (The U.S. National Institutes of Health digital archive of journal articles.)
• SMA Clinical Research Center, Neurological Institute of New York, Columbia University