Support Groups for SMA...Talking to other people living with spinal muscular atrophy (SMA) is a great way to find support. Support groups can provide advice, information, and a sense of community. Joining a...
Spinal Muscular Atrophy Research...Understanding of spinal muscular atrophy (SMA) has come a long way, especially in the past few decades. Researchers in the 1990s found that changes to the SMN1 gene leads to...
My Sibling Has SMA...Siblings of people with spinal muscular atrophy (SMA) often help their parents with caregiving. This can impact your life in positive and negative ways. Talk to your parents or other...
Caregiver Corner...Caregiving can be a fulfilling experience that improves your relationship with loved ones. However, it is often a full-time responsibility that affects other parts of your life. Stress and fatigue...
Complementary and Alternative Medicine...Treatment of spinal muscular atrophy (SMA) should focus on therapies with proven clinical benefit. This includes disease-modifying treatments that have been approved by the US Food and Drug Administration (FDA)...
What Is a Tracheostomy?...Weak chest muscles can make breathing difficult for children with spinal muscular atrophy (SMA). This is because their lungs may not fully develop. They also have a higher risk of...
Physical and Occupational Therapy for Spinal Muscular Atrophy...Muscle weakness is the most obvious symptom of spinal muscular atrophy (SMA). It varies for every person, depending on disease severity. How it affects motor functioning and daily activities also...
Coping with SMA Diagnosis...Getting diagnosed with any chronic illness is an overwhelming experience. In spinal muscular atrophy (SMA), diagnosis usually happens at birth or during infancy. Delays and uncertainty about the diagnosis often...
Other Diagnostic Tests Used in SMA...Spinal muscular atrophy (SMA) is caused by problems with nerve cells in the spine that control muscles. Tests for muscle health and nerve function are often abnormal in people with...
Adults and Spinal Muscular Atrophy...Adults with spinal muscular atrophy (SMA) have the same desire to live and work independently as everyone else. Stereotypes about disabilities often make this difficult. However, certain laws protect people...
Food Texture Modifications...People with spinal muscular atrophy (SMA) may have difficulty swallowing and other feeding problems. This can lead to undernutrition, which can make muscle weakness worse. It can also lead to...
Spinraza (nusinersen)...In 2016, Spinraza (nusinersen) became the first drug approved by the US Food and Drug Administration (FDA) to treat children and adults with spinal muscular atrophy (SMA). It works by...
Dating and Intimacy With SMA...Having spinal muscular atrophy (SMA) does not mean it is impossible to date or have sex. Adults with SMA still have happy and intimate relationships. However, certain stereotypes about disabilities...
Cough Assistance for Spinal Muscular Atrophy...Coughing is an important way to clear mucus and other secretions from our airways. This helps prevent the airways from getting blocked. Children with spinal muscular atrophy (SMA) have weaker...
Complications of Spinal Muscular Atrophy: Fractures...People with spinal muscular atrophy (SMA) have muscle weakness because of a defect in their motor neurons. In severe types of SMA, weakness can progress and cause serious complications. One...
Type 3 Kugelberg-Welander...People with type 3 spinal muscular atrophy (SMA) have milder symptoms that progress slowly. They can stand and walk independently at some point but may lose the ability later in...
How Common is Spinal Muscular Atrophy?...Spinal muscular atrophy (SMA) is one of the most common genetic conditions that affect children. One in every 6,000 to 10,000 babies worldwide are born with SMA. Type 1 SMA...
Zolgensma (onasemnogene abeparvovec-xioi)...In 2019, the US Food and Drug Administration (FDA) approved Zolgensma (onasemnogene abeparvovec-xioi) to treat children under 2 years old with spinal muscular atrophy (SMA). Zolgensma is a gene therapy...
Evrysdi™ (risdiplam)...In 2020, the US Food and Drug Administration (FDA) approved Evrysdi™ (risdiplam) to treat adults and children over 2 months old with spinal muscular atrophy (SMA). In 2022, that approval...
Who Treats Spinal Muscular Atrophy?...People with spinal muscular atrophy (SMA) require ongoing, specialized care from a team of doctors and other health specialists. The team is usually managed by a doctor who specializes in...