The Nutritional Management of

Children with SMA: A Toolkit

Nora McCormick RD, CDPPC Nutrition Trainee

June 16th, 2015

Background Initial experiences in Neuromuscular Clinic

Lack of significant previous exposure to Spinal Muscular Atrophy population and commonly encountered nutritional issues

Recognizing a need for a basic but comprehensive guide to nutritional management of children with SMA Thinking about other clinicians, especially RDs,

approaching this population with limited experience

Objectives

To synthesize and organize existing resources and research regarding the nutritional considerations of children with SMA, while furthering my own knowledge on the topic

To use the above strategy to create a product that can be utilized to enhance the care of children with special health care needs

Scope Audience: Healthcare professionals

Geared towards registered dietitians but can be used by other disciplines as well

Appropriate for clinicians with limited experience working with children with SMA

Accessibility Published online as web book on issuu.com:

http://issuu.com/nutritionaltoolkitforsma/docs/ppc_toolkit

Process Identify need

Conduct literature and resource review

Synthesize and summarize information

Determine appropriate content and depth of information

Feedback

Revision

Future Directions Further input and revision

Experienced dietitians and clinicians from other institutions

Areas for potential improvement: Resources

Design and layout

Goal: Resource can be accessed from a link on Cure SMA website