Guides: Disability Specific Resources: Spinal Muscular Atrophy

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New Horizons Un-Limited Publications
Information: Spinal Muscular Atrophy
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This information guide is written by New Horizons Un-Limited. The guide provides information about this disability including Definition, Types, Causes, Characteristics, and Statistics. We envision a world with the inclusion and participation of individuals with disabilities in our communities, our workplaces and our lives so we also include information on Awareness, Viewpoint, Needs and Solutions, Therapy and Rehabilitation, On-line Discussion Forum, and where to go on the Internet to Learn More.

Links to Publications by Others
New Sign A Familty Guide to the Consensus Statement for Standard of Care in Spinal Muscular Atrophy

This Family Guide to the Consensus Statement for Standard of Care in Spinal Muscular Atrophy was prepared by SMA Advocates for families affected by SMA. The full text of the Consensus Statement (22 pages) was published in the August 2007 issue of the Journal of Child Neurology and can be found on the journal’s website. A link to the document is provided on the last page of this guide.

SMA Care Series CARING CHOICES For Parents of Infants Newly Diagnosed with SMA Type I

This guide from SMA Foundation outlines concerns, info, and options for parents of infants newly diagnosed with SMA by summarizing 3 respiratory care options.

SMA Standard of Care

This is the Family Guide to the Consensus Statement for the Standard of Care in Spinal Muscular Atrophy.

Spinal Muscular Atrophy for Parents

This is a great article for parents from KidsHealth, which has great medical reviewed information “without the doctor speak”.

Spinal Muscular Atrophy Support and Assistance for Adults and Seniors

This article by Christopher G. Kelle, MEd offer information about SMA and an outline of an Action Plan and Toolkit with resources for each topic such as eating healthy foods, physical and occupationa therapy, adaptive equipment counseling and funding sources.

New Sign Understanding Spinal Muscular Atrophy

Families of SMA has created a booklet entitled Understanding SMA that is intended to serve as a source of information and support for children and adults with Spinal Muscular Atrophy (SMA).

This is a fairly comprehensive booklet on information on SMA including a close look at Genetics, what to expect, what you should know and so much more.

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