Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign up Log in
What is This Site Help Center Crisis
Powered By

Browse All

Types (181)

More

Spinal Muscular Atrophy (159)

How Do Clinical Trials Work for SMA?
5 Reasons To Consider Participating in SMA Clinical Trials
Gaming With SMA: Choosing a Gaming Platform
Dating With SMA: Love Is Out There, But Finding It Takes Strength

Type 0 Sma (20)

What Is Kugelberg-Welander Disease?
The Genetics of Spinal Muscular Atrophy
The Role of SMN1 and SMN2 Genes in Spinal Muscular Atrophy
The Difference Between SMA and Myotubular Myopathy

Type 1 Sma (44)

Majority of U.S. Newborns Now Screened for SMA
Scoliosis Surgery in Kids With SMA Can Cause Serious Complications, Research Finds
Treatment With Evrysdi After Zolgensma Shows Benefit for SMA Type 1
Blood Test May Help Predict Spinal Muscular Atrophy Severity, Treatment Effectiveness

Type 2 Sma (50)

Wheelchair Hockey and Other Adaptive Sports Score Big Health Benefits for People With SMA
Young Adults With Disabilities Cite Pitfalls in Transitioning From Pediatric to Adult Care
Osteoporosis, Low Bone Density Common in Children With SMA Types 2 and 3
More Than Half of People Who Start Spinraza for SMA Stop Within 2 Years, Study Finds

Type 3 Sma (54)

More Than Half of People Who Start Spinraza for SMA Stop Within 2 Years, Study Finds
The Challenges of Motherhood With SMA
In Type 3 SMA, Breathing and Upper-Body Function Worsen After Walking Stops
Participants Sought for Clinical Trial of SMA Muscle Therapy Apitegromab

Type 4 Sma (35)

Developmental Milestones in Babies With SMA
Tay-Sachs vs. Spinal Muscular Atrophy: Comparing Late-Onset Forms
The Role of SMN1 and SMN2 Genes in Spinal Muscular Atrophy
Nasal Regurgitation With Spinal Muscular Atrophy

Distal Sma (4)

The Genetics of Spinal Muscular Atrophy
Charcot-Marie-Tooth Disease and SMA: What Are the Differences?
What Causes Spinal Muscular Atrophy? 5 Facts To Know
Types of Spinal Muscular Atrophy: How They Differ

Kennedy's Disease (6)

What Causes Spinal Muscular Atrophy? 5 Facts To Know
Types of Spinal Muscular Atrophy: How They Differ
How Is SMA Diagnosed? Testing and More
Understanding Spinal-Bulbar Muscular Atrophy (SBMA)

Sma With Progressive Myoclonic Epilepsy (3)

The Genetics of Spinal Muscular Atrophy
What Causes Spinal Muscular Atrophy? 5 Facts To Know
Types of Spinal Muscular Atrophy: How They Differ

Sma With Respiratory Distress (Smard) (8)

The Genetics of Spinal Muscular Atrophy
Spinal Muscular Atrophy With Respiratory Distress (SMARD)
How Is SMA Diagnosed? Testing and More
Types of Spinal Muscular Atrophy: How They Differ

Sma With Lower Extremity Predominance (6)

What Causes Spinal Muscular Atrophy? 5 Facts To Know
Charcot-Marie-Tooth Disease and SMA: What Are the Differences?
The Genetics of Spinal Muscular Atrophy
Types of Spinal Muscular Atrophy: How They Differ

X Linked Infantile Sma (2)

What Causes Spinal Muscular Atrophy? 5 Facts To Know
Types of Spinal Muscular Atrophy: How They Differ

Treatments (93)

More

Zolgensma (Onasemnogene Abeparvovac Xioi) (42)

How Do Clinical Trials Work for SMA?
Long-Term Data: Children With Type 1 SMA Keep Gaining Motor Skills After 3 Years on Evrysdi
5 Reasons To Consider Participating in SMA Clinical Trials
Study Recruiting for New Add-On SMA Treatment

Vertical Expandable Prosthetic Titanium Rib (Veptr) (1)

SMA Comorbidities: Scoliosis, Breathing Difficulties, and More

Surgery For Scoliosis (14)

Spinal Muscular Atrophy Type 3
Spinal Muscular Atrophy Type 2
Scoliosis Surgery in Kids With SMA Can Cause Serious Complications, Research Finds
Facts and Statistics About Spinal Muscular Atrophy

Spinraza (Nusinersen) (58)

Study Recruiting for New Add-On SMA Treatment
How Do Clinical Trials Work for SMA?
Evrysdi Development Team Wins Drug Discovery Award for Oral SMA Treatment
Scoliosis Surgery in Kids With SMA Can Cause Serious Complications, Research Finds

Speech Therapy (13)

Building Medical Support Teams for Spinal Muscular Atrophy
Assistive Equipment for Spinal Muscular Atrophy
Nasal Regurgitation With Spinal Muscular Atrophy
Assistive Technology for Communication in SMA

Respiratory Therapy (13)

Ways To Make Your Home More SMA-Friendly
Assistive Equipment for Spinal Muscular Atrophy
Spinal Muscular Atrophy Type 2
Muscle Weakness in Spinal Muscular Atrophy

Physical Therapy (34)

Wearable Cyborg Limb Shows Promise as Walking Treatment for SMA
Paraspinal Muscular Atrophy vs. Spinal Muscular Atrophy: What’s the Difference?
Standers for SMA — Tips for Using Specialized Equipment
SMA Newborn Screening: Your Guide

Occupational Therapy (22)

Standers for SMA — Tips for Using Specialized Equipment
Assistive Equipment for Spinal Muscular Atrophy
Your Child Is Newly Diagnosed With SMA. Now What?
Talking to Others About Your Child’s SMA

Nutrition (8)

How To Use a Feeding Tube at Home: 12 Tips for Caregivers
SMA: Nutrition, Exercise, and Mental Health Tips
SMA Diet and Eating Tips
Building Medical Support Teams for Spinal Muscular Atrophy

Non Invasive Breathing Support (17)

Managing Gastric Reflux in SMA
Tay-Sachs vs. Spinal Muscular Atrophy: Comparing Late-Onset Forms
Respiratory Equipment for SMA: What To Look For
SMA and 3 Other Neuromuscular Disorders That Affect Breathing

Nasojejunal (Nj) Tube (1)

Difficulty Swallowing With Spinal Muscular Atrophy

Nasogastric (Ng) Tube (9)

How To Use a Feeding Tube at Home: 12 Tips for Caregivers
Spinal Muscular Atrophy Type 1
Nasal Regurgitation With Spinal Muscular Atrophy
Assistive Equipment for Spinal Muscular Atrophy

Immunizations (1)

Spinal Muscular Atrophy Treatment and Therapy Options

Gastronomy (G) Tube (11)

Assistive Equipment for Spinal Muscular Atrophy
My Perspective: Dating With SMA
Spinal Muscular Atrophy Type 1
How To Use a Feeding Tube at Home: 12 Tips for Caregivers

G Tube And Nissen Fundoplication (Stomach Wrap) (1)

Managing Gastric Reflux in SMA

Exercise (10)

Fatigue and Spinal Muscular Atrophy
Spinal Muscular Atrophy Treatment and Therapy Options
5 Types of SMA Physical Therapy and Tips for Success
Muscle Weakness in Spinal Muscular Atrophy

Evrysdi (Risdiplam) (37)

Long-Term Data: Children With Type 1 SMA Keep Gaining Motor Skills After 3 Years on Evrysdi
Dr. Strober Offers Tips for Transitioning to Adult Care for SMA
Considering the Transition to Adult Care for SMA: A Q&A With Dr. Strober
Improved SMA Screening and Greater Awareness in Pediatricians Key to Early Diagnosis

Clinical Trials (8)

The History of Spinal Muscular Atrophy
Talking to Others About Your Child’s SMA
How Do Clinical Trials Work for SMA?
New Trial Will Test Higher Dose of Nusinersen for People With Later-Onset SMA

Topics (185)

More

Personal Stories (39)

Take the Pain and Make Art: An Interview With Will Stocker About His Film “Crippled”
Winter Safety Tips for People With SMA
Brothers With SMA Complete Their Doctorates Weeks Apart
Living as a Superhero

News (77)

Spinraza Alone May Be Better Than Combining It With Zolgensma To Treat SMA Type 1
Long-Term Data: Children With Type 1 SMA Keep Gaining Motor Skills After 3 Years on Evrysdi
Nusinersen Improves Motor Function, Quality of Life in Adults With SMA, Studies Find
How Do Clinical Trials Work for SMA?

Expertise Level (67)

Improved SMA Screening and Greater Awareness in Pediatricians Key to Early Diagnosis
Rare Case of SMA Caused by Non-5q Mutation
Are People With SMA Eligible for Moderna and Johnson & Johnson Booster Shots?
Chemical Change May Lead To Safer, More Effective SMA Treatments

Format (137)

Emergency Room Advice for People With SMA
The Eyes Have It: TD Pilot Harnesses iPadOS 15, Lets Users Control Device With Their Eyes
How Do Clinical Trials Work for SMA?
Gaming With SMA: Choosing a Gaming Platform

Multiple Diagnoses (29)

More

Adult Still’s Disease (Asd) (1)

SMA Treatment for Children vs. Adults: 5 Key Differences

Adverse Childhood Experiences (Ace) (8)

Pediatric Neuromuscular Disorders: 9 Things To Know
Parenting a Child With SMA
SMA Newborn Screening: Your Guide
SMA Treatment for Children vs. Adults: 5 Key Differences

Amyotrophic Lateral Sclerosis (Als) (2)

SMA and ALS: 5 Differences and 3 Similarities
What Is Kennedy's Disease? Rarity and Testing

Anxiety (2)

How Spinal Muscular Atrophy Can Affect Your Mental Health
Staying Afloat Amidst a Pandemic and a Psychological Crisis

Cardiomyopathy (1)

Cardiomyopathy in Spinal Muscular Atrophy

Depression (5)

Staying Afloat Amidst a Pandemic and a Psychological Crisis
Understanding Depression and Spinal Muscular Atrophy
How Spinal Muscular Atrophy Can Affect Your Mental Health
5 Spinal Muscular Atrophy Symptoms and Signs To Watch For

Gastroesophageal Reflux Disease (Gerd) (3)

SMA Diet and Eating Tips
Managing Gastric Reflux in SMA
Beyond Muscle Wasting: Other Ways SMA Affects the Body

Guillain–Barré Syndrome (1)

What Is Kennedy's Disease? Rarity and Testing

Heart Disease (1)

Beyond Muscle Wasting: Other Ways SMA Affects the Body

Infertility (1)

Beyond Muscle Wasting: Other Ways SMA Affects the Body

Insomnia (1)

How Spinal Muscular Atrophy Can Affect Your Mental Health

Liver Disease (1)

SMA Medication Zolgensma May Cause Liver Failure, Warns New Label Update

Lower Back Pain (1)

Sacroiliac Joint Dysfunction and SMA

Multiple Sclerosis (1)

What Is Kennedy's Disease? Rarity and Testing

Obesity (1)

SMA: Nutrition, Exercise, and Mental Health Tips

Osteoporosis (3)

Bone Fractures and Spinal Muscular Atrophy
SMA: Nutrition, Exercise, and Mental Health Tips
Osteoporosis, Low Bone Density Common in Children With SMA Types 2 and 3

Pregnancy Induced High Blood Pressure (1)

6 Facts About Pregnancy With SMA

Sleep Apnea (1)

How Spinal Muscular Atrophy Can Affect Your Mental Health

Social Anxiety Disorder (1)

Making Friends and Overcoming Social Anxiety With SMA

Spinal Disc Herniation (Slipped Or Bulging Disc) (1)

Paraspinal Muscular Atrophy vs. Spinal Muscular Atrophy: What’s the Difference?

Spinal Stenosis (1)

Paraspinal Muscular Atrophy vs. Spinal Muscular Atrophy: What’s the Difference?

Spine Problems (1)

Paraspinal Muscular Atrophy vs. Spinal Muscular Atrophy: What’s the Difference?

Tay–Sachs Disease (1)

Tay-Sachs vs. Spinal Muscular Atrophy: Comparing Late-Onset Forms

Thank you for subscribing!

Become a member to get even more

See answer