Support & Care Publications

With publications like Directions, our biannual family newsletter, and our care series booklets, Cure SMA is committed to providing the entire community with the resources they need.

Care Series Booklets | Care Series Booklets - Spanish | Newsletters

Care Series Booklets

Guide for Parents and Caregivers

What you need to know and do about an SMA diagnosis.

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Guide for Healthcare Providers

What you need to know and do about an SMA diagnosis.

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Understanding SMA

This booklet covers all the basics of SMA, including genetics, diagnosis, types of SMA, daily life with SMA, and more.

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Cure SMA Family Support and Patient Services

This booklet has details on Cure SMA programs for newly diagnosed families, care packages, our equipment pool, local support, resources for daily life, the Annual SMA Conference, and more.

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Learning About Clinical Trials

This booklet covers the clinical trial process, phases, accelerated approval and expanded access, choosing to participate, and more.

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Caring Choices

This booklet is focused on caring choices for parents of infants newly diagnosed with SMA type I. Topics covered include respiratory care and palliative care.

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The Genetics of SMA

Confused about genes, proteins, DNA, and how SMA is diagnosed? This booklet includes definitions, explanations, and diagrams.

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Breathing Basics

This booklet is focused on the critical aspects of respiratory care for children with Spinal Muscular Atrophy. Includes information on respiratory care management, common respiratory issues, equipment, and the differences in care for different types of SMA.

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Nutrition Basics

Learn about nutrition principles for SMA, potential complications, feeding tubes, and more.

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Musculoskeletal System

The goal of this booklet is to help children, families, and other professionals including nurses, physicians, and therapists understand how SMA can affect the body’s musculoskeletal system.

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Choice and Connection to Care: A Health Insurance Roadmap for People Living with SMA and Their Caregivers

This booklet is focused on broad insurance related questions common in the SMA community, in addition to information regarding insurance coverage, a glossary of common insurance terms and more.

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Care Series Booklets - Spanish

Understanding SMA (Guia General De La Atrofia Muscular Espinal)

Este folleto cubre todos los fundamentos de la Atrofia Muscular Espinal, incluyendo la genética, diagnóstico, los tipos, la vida diaria con La Atrofia Muscular Espinal y más.

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Caring Choices (Opciones Para Los Cuidados)

Este folleto se centra en opciones de cuidado para los padres de los niños con diagnóstico reciente de La Atrofia Muscular Espinal tipo 1. Los temas cubiertos incluyen cuidados respiratorios y cuidados paliativos.

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The Genetics of SMA (La Genetica De La Atrofia Muscular Espinal)

Este folleto incluye las definiciones, explicaciones y diagramas sobre acerca de los genes, proteínas, cómo se diagnostica La Atrofia Muscular Espinal y más.

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Breathing Basics (Informacion Basica Sobre La Respiracion)

Este folleto se centra en los aspectos críticos de la atención respiratoria para niños con Atrofia Muscular Espinal. Incluye información sobre la gestión de los cuidados respiratorios, problemas respiratorios comunes, el equipo y las diferencias en la atención para los diferentes tipos de Atrofia Muscular Espinal.

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Nutrition Basics (Informacion Basica Sobre La Nutricion)

Aprenda acerca de los principios de nutrición para La Atrofia Muscular Espinal, complicaciones potenciales, tubos de alimentación, y más.

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