SMA Quiz: Test your knowledge
Test your understanding of SMA with this quick quiz and see how well you grasp the basics of SMA, including its types, diagnosis, and treatment options.
SMA empowerment: Co-piloting your healthcare journey
Whether you have spinal muscular atrophy (SMA) or are a caregiver for someone with the disease, it’s important to feel like you are an active participant in your care or that of your loved one. This is your life; empower yourself and gain control of your journey.
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Read: Empowerment through knowledge
Building rapport: A guide to effective communication with your SMA care team
From preparing for appointments to maintaining open communication with your healthcare team, a variety of strategies and best practices can help make your doctor visits or clinic days as efficient and beneficial as possible.
Speak up, be heard: Mastering the art of SMA care collaboration
Coordinating among the various specialists that someone with SMA may need on their care team requires patients and their families to be proactive about communicating with providers, documenting instructions, and advocating for their own needs.
Dream team: Assembling your ideal SMA care squad
Your SMA healthcare team is typically made up of a comprehensive, coordinated multidisciplinary group of healthcare professionals who, depending on needs and SMA type, can help you or your child move and breathe better, maintain good mental health, and help manage symptoms.
Your kind of healthy: Defining wellness on your terms with SMA
As someone who has lived with SMA for three decades, Kevin Schaefer says he has learned the importance of living well with his disability, rather than actively fighting against it. He shares what works for him with the hope that it might help others, too.
Your SMA success plan: Creating a personalized care strategy
Setting up a personalized care plan that takes into account disease progression and addresses your changing physical and emotional needs is one of your first steps toward effectively managing SMA.
Stick with it: Unpacking the benefits of consistent SMA treatment
To maintain consistent treatment, it’s important to be in regular contact with your healthcare team, stay connected with your support network, and make self-care a priority, including your mental health.
Adults with SMA need and deserve better support systems
Every person with SMA deserves to have comprehensive care and to know they'll be taken care of, no matter what happens, from birth to death, says patient advocate Brianna Albers.
SMA life expectancy by disease type
The life expectancy for people with SMA depends on the type of their disease and symptom severity. Starting treatment early is thought to improve life expectancy, and disease-modifying therapies can work to slow or halt progression of the various symptoms of SMA.
Keep an open mind, and 3 other tips for working with caregivers
As SMAers, we’ve probably all been there. We work tirelessly to build a caregiving team. We train, explain, and expose the inner workings of our dignity. We allow new hands and energy into…
Exercise and physical therapy for SMA
Exercise can offer many benefits to people living with spinal muscular atrophy by increasing muscle strength, flexibility, and range of motion. A physical or occupational therapist can help establish a safe exercise program.
