Getty Owl Foundation

SMA GENERALLY

• Consensus Statement for Standard of Care in SMA [General]

• Consensus Statement for Standard of Care in SMA [Family Guide]

• Introduction for SMA Families

• Caring Choices for SMA

• SMA MebEd Cafe Webcast

RESPIRATORY

• Special Considerations for Respiratory Management of SMA – Schroth [NOTE: Bipap “Span of 10” discussed at p. 5247.]

• SMA Type 1: Noninvasive Respiratory Management Approach – Bach [NOTE: Bipap “Span of 10” discussed.]

• Spinal Muscular Atrophy Type 1: Prolongation of Survival by Noninvasive Respiratory Aids – Bach [Note: Bipap “Span of 10” quote below is in the article but this link is to the Abstract only. “Almost as inadequate as providing no treatment at all is the use of bilevel positive airway pressure (BiPAP) at low pressure spans (<10 cm H2O between expiratory and inspiratory pressure, subsequently referred to as ‘low span’). Lower settings are inadequate for full ventilatory support, inspiratory muscle rest, and reversal of paradoxical chest wall movement to promote lung growth and chest wall compliance. Low levels of respiratory assistance using lowspan BiPAP for nasal ‘noninvasive ventilation’ is not sufficient to markedly prolong life for children with SMA-1.”

• SMA Acute Respiratory and Extubation Protocol – Schroth

• SMA Intensive Care & Extubation Protocol – Bach

• LMN Synagis Getty [Denial Overturned]

• LMN CoughAssist T70 over CA3000 Getty [Denial Overturned]

• Breathing Basics for SMA

GASTRONOMY

• Gastronomy Tube (G-tube) & Nissen Fundoplication Procedure

NUTRITION

• Consensus Statement for Standard of Care in SMA [Nutrition]

• AA Diet Info for SMA

• Muscle Metabolism

• SMA Dietary Needs from a Metabolic Specialist

• What is the Amino Acid Diet?

GENETICS

• Claire Altman Heine Foundation (Carrier Testing)

• The Genetics of SMA

• Article on Screening & Carrier Testing

• Article on SMN2 Gene

RESEARCH

• Article on Dr. Kaspar’s Gene Therapy as Possible Cure for SMA

EQUIPMENT & SUPPLIES

• SMA Medical Supply

• Inside SMA

EDUCATION & COMMUNICATION

• SMA iPad

NETWORKING

• FACEBOOK: SMA FAMILIES, PLEASE CONTACT US VIA EMAIL OR PHONE SO WE MAY HELP YOU NETWORK WITH OTHER SMA FAMILIES

• FACEBOOK: Getty’s Page (Click Here)

• SMASpace