Care Series Booklets
With publications like our Care Series Booklets, along with other helpful resource booklets, Cure SMA is committed to providing our spinal muscular atrophy (SMA) community with the information you need to make decisions about treatment and care.
Request Printed Care Series Booklets
If you are a care provider or individual with SMA looking for hard copies of any of these booklets, please click the button below to submit an order request.
Care Series Booklets
SMA Diagnosis From Newborn Screening - Family Guide
SMA Diagnosis From Newborn Screening - Family Guide
This booklet offers a foundation for understanding SMA if you are a parent or a patient learning about SMA for the first time.
Understanding SMA
Understanding SMA
This booklet covers all the basics of SMA, including genetics, diagnosis, types of SMA, daily life with SMA, and much more.
Genetics of SMA
Genetics of SMA
This booklet helps navigate conversations about genes, proteins, and DNA related to SMA. It includes definitions, explanations, and diagrams.
Nutrition Basics
Nutrition Basics
This booklet explores the nutrition principles for someone living with SMA, potential complications, feeding tubes, and more.
Caring for Emotional and Mental Health
Caring for Emotional and Mental Health
This booklet outlines mental and emotional health considerations for those with SMA, or those who care about someone who has SMA, as well as strategies for support and coping.
Considering Drug Combinations
Considering Drug Combinations
This booklet focuses on the complex topic of combining treatments and discusses important considerations when thinking about combination therapy as a option for treatment of SMA.
Health Insurance Roadmap
Health Insurance Roadmap
This booklet focuses on common insurance-related questions, guidance on talking to insurers about treatment, a glossary of terms, and more.
Living Unlimited: Newly Diagnosed
Living Unlimited: Newly Diagnosed
This booklet is for new members of the SMA community experiencing an SMA diagnosis for the first time and wondering how it will impact the life of their child and that of the family.
SMA Diagnosis From Newborn Screening - Healthcare Providers Guide
SMA Diagnosis From Newborn Screening - Healthcare Providers Guide
This booklet offers a foundation for understanding SMA if you are healthcare provider learning about SMA for the first time.
Community Support Services
Community Support Services
This booklet outlines our resources and support programs, including ongoing national and local programs, ways to stay connected, and more.
Breathing Basics
Breathing Basics
This booklet looks at all aspects of respiratory care for people with SMA, including respiratory care, common respiratory issues, and equipment for respiratory management.
Musculoskeletal System
Musculoskeletal System
This booklet is to help children, families, and other professionals (e.g., nurses, physicians, and therapists) understand how SMA can affect the body’s musculoskeletal system.
Learning About Clinical Trials
Learning About Clinical Trials
This booklet covers the clinical trial process, phases, accelerated approval and expanded access, choosing to participate, and more.
Living Unlimited: Adults
Living Unlimited: Adults
This booklet is geared for adults with SMA. Thanks to contributions and feedback from other adults with SMA, we have collectively pulled together this booklet on topics that are important to the adult community specifically.
Update in Best Practices Summary Reports
Our Update in Best Practices Summary Reports supports improved care for individuals with SMA. These recommendations were developed in partnership with individuals living with SMA, caregivers, and SMA healthcare professionals. These resources aim to empower individuals with SMA, their families, and caregivers to participate in and advocate for their care and treatment.