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5 Resources for People with Spinal Muscular Atrophy

Use these links to learn more about spinal muscular atrophy (SMA), including patient education and support.

5 Resources for People with Spinal Muscular Atrophy

Spinal muscular atrophy (SMA) is a group of rare genetic disorders that interfere with the nervous system’s ability to send signals to muscles. This causes muscles to weaken, shrink, and atrophy. It typically affects muscles in the upper back, upper arms, upper legs, and trunk. However, it can also affect muscles that are needed to control breathing and swallowing.

There is no cure for SMA, but there are several medications that have become available in recent years that can help slow the progression of the condition. Physical and occupational therapy are also important to treatment.

While SMA is a different experience for every person, one thing that all people with SMA have in common is a need for information and support about the condition.

With that in mind, the links below offer resources that provide information about the condition, the treatments available, and where to find support.

Muscular Dystrophy Association
The MDA is a non-profit organization dedicated to advancing the understanding, treatment, and care for people with neuromuscular diseases. Their Spinal Muscular Atrophy Fact Sheet offers an easy-to-understand overview of the condition, including the different types of SMA, how this disorder affects the body, and how it is treated. It’s a perfect starting point for caregivers and patients who are beginning to learn more about the condition.

Cure SMA
If you are searching for healthcare providers that treat SMA or are looking to connect with other people whose lives have been affected by SMA, Cure SMA is a great place to start. The content on their site focuses on both individual experiences as well as the SMA community. It is also one of the online resources with a lot of information aimed at teens and adults who are living with SMA, including recommendations for tools that can help with everyday tasks, questions to consider when choosing a college, finding a career, traveling, and participating in sports.

SMA Foundation
If you are looking for information about treatments for SMA that are currently in development, visit the SMA Foundation’s website. The site features information about the drugs that are currently under development, as well as information about the development process for SMA medications.

SMA News Today
As the name implies, SMA News Today offers the latest news on spinal muscular atrophy. You’ll find stories written by people living with SMA, reports about new developments in treating SMA, and articles about coping with the physical and emotional challenges of living with SMA. The site also includes pages of useful patient education materials, which offer insight into different types of SMA and different treatment strategies.

Together in SMA
A good site to visit if you need practical information about different aspects of living with SMA—from building a care team, to navigating insurance, to making adaptations around your home to make everyday tasks a little easier.

Medically reviewed in April 2021.

Sources:
MedlinePlus. "Spinal muscular atrophy."
Muscular Dystrophy Association. "Spinal Muscular Atrophy."
Drugs.com. "Medications for Spinal Muscular Atrophy."
Columbia University Department of Neurology. "Living with SMA."
Muscular Dystrophy Association. "What is Spinal Muscular Atrophy?"
Cure SMA. "Find a Location."
Cure SMA. "Teens and Adults."
SMA Foundation. "Drugs in Development: Therapeutics Timeline."
SMA News Today. "SMA Types."
SMA News Today. "Treatments for Spinal Muscular Atrophy."
Together in SMA. "Spinal muscular atrophy (SMA) care and treatment options."
Together in SMA. "Health insurance tips and guiding principles."
Together in SMA. "In-home care for spinal muscular atrophy (SMA)."

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