Your SMA support system: Creating connections and community
Last updated April 16, 2025, by Mary Chapman
Fact-checked by PatrÃcia Silva, PhD
Having spinal muscular atrophy (SMA) presents challenges that can significantly affect your day-to-day life. While treatments, specialized equipment, and healthy habits have helped many people with SMA live fuller, more empowered lives, living with the condition can still feel overwhelming.
Building an SMA support systemcan make all the difference. Whether you need emotional support, practical advice, or the comfort of knowing someone else gets it, connection can increase your quality of life by bringing you strength, hope, and reassurance when you need it most.
Why having a support system matters
Having a strong support system is vital for people in the SMA patient community.
Family and friends, online communities, SMA support groups, and a good team of healthcare professionals can all help with the challenges that come with SMA — whether they’re medical, emotional, or just part of daily life.
Connecting with those who share similar experiences with neuromuscular diseases can help you feel less alone and help relieve feelings of stress, anxiety, or sadness — all components of mental health.
SMA peer support can also empower you to advocate for yourself and others and can include tips and guidance on navigating everyday life, from choosing specialized equipment to managing your daily routines.
How to build your SMA support system
Your SMA community can include your family and friends, support groups, SMA online forums, SMA multidisciplinary care team members, and peers you meet at SMA community events.
Lean on family and friends
Whether it’s you or your child with SMA, sharing your journey with your loved ones can foster resilience and reduce stress. Plus, the more that friends and family members understand what you’re going through, the better they can support you.
For example, you may need someone to help you with an errand or go to the doctor with you. Sometimes, you need someone to advocate on your behalf, help you find support services, or assist with financial planning.
Social connections and an SMA family support network can also help combat mental health issues, which are common in progressive disorders such as SMA.
Oftentimes, sharing a hobby with loved ones can brighten your mood and help improve your outlook.
Join online communities
When you have a progressive condition such as SMA, or are a caregiver for a loved one with the disease, joining online communities — like the SMA News Today forums and Facebook page — can provide emotional, practical, and social support.
Benefits can include:
- better coping skills
- the ability to network with others globally
- an improved symptom management
- feelings of empowerment
- reduced stress
- easier access for those with mobility or transportation issues
- availability of SMA caregiver resources.
If you want to find other positive, supportive places you can trust, consider:
- contacting Cure SMA and/or the Muscular Dystrophy Association (MDA), which offer virtual support services and activities, and can connect you with other communities
- asking your healthcare team for referrals
- asking others with SMA or their caregivers for recommendations.
Look for local support groups
While not always possible, face-to-face connections can be especially meaningful. Meeting with an SMA support group in person, instead of online, can mean fewer distractions and misinterpretations.
You can find local support groups through your healthcare team, Cure SMA, or other neuromuscular or SMA advocacy organizations. If you engage with a forum, you can also ask the participants for recommendations.
You may even want to start your own support group. Some tips might help:
- Determine whether your focus will be emotional support, advocacy, resource sharing, or education.
- Define your goals, such as raising awareness of treatments and clinical studies, sharing care approaches, or connecting families.
- Connect with national organizations such as Cure SMA or the Muscular Dystrophy Association for guidance and resources.
- Choose whether your format will be in person, online, or a hybrid of the two.
- Advertise through healthcare facilities and SMA organizations to attract members.
- Apply for grants or collaborate with nonprofit groups for financial support.
- Promote the group online and distribute posters in clinics or through SMA organizations.
Build your healthcare dream team
To make sure you’re on the same page, and your standard of care is met, you should get to know your healthcare providers. You want to feel like they listen to you and are attentive to your needs.
But first, you must build your care team. Because every person with SMA can have different issues, your healthcare team won’t necessarily resemble someone else’s.
Generally, your team will be composed of a coordinated group of healthcare professionals who, depending on your needs and SMA type, can help you or your child manage symptoms.
With your input, a neurologist will typically coordinate your multidisciplinary care as needed. These team members may include:
- a pulmonologist
- a speech therapist
- a physical therapist
- a gastroenterologist
- a nutritionist
- an orthopedist
- a psychologist or mental health provider.
Strengthening your connections
Nurturing and strengthening your community connections is essential. A robust network can provide emotional validation, practical assistance, and coping skills.
To reinforce your connections, these tips can help:
- Maintain contact by proactively scheduling check-ins to build deeper relationships.
- Engage in mutual support, as reciprocal relationships are generally more sustainable and beneficial.
- Address any barriers by seeking professional help if loneliness or other emotional issues hinder relationship growth.
- Strengthen relationship quality by regularly expressing appreciation, resolving any conflicts, and sharing personal experiences.
- Proactively remain connected by using social media to stay connected to distant contacts.
- Attend or host events to establish yourself as a community supporter.
- Share your story through vlogs or podcasts to strengthen connections by fostering trust, empathy, and mutual understanding.
Overcoming common challenges
Those with SMA often face challenges affecting their mobility, daily activities, and overall quality of life. These challenges can be hard to talk about with family, friends, or other support network members.
For instance, maybe you want to attend college but aren’t sure about the specialized equipment required, or perhaps you’re feeling stressed about transitioning from childhood to adult care.
Whatever your situation, there are ways to navigate tricky conversations with your support network.
- Practice discussing sensitive topics beforehand with a trusted friend or family member.
- Express your needs using clear, direct language.
- Don’t hesitate to ask for clarity regarding medical decisions.
- If your speech is unclear, use augmentative and alternative communication devices.
- If a discussion with a healthcare provider feels rushed, request a follow-up appointment or a longer visit.
- If a provider’s approach does not align with your goals, request explanations and explore alternatives.
- Plan key points to ensure clarity during high-stakes or emotional discussions with family members or friends.
- Consider breaking information into smaller segments for sensitive topics such as health updates.
- Work with a speech-language pathologist to reduce frustration when communicating with family members.
- Consider contacting a therapist for coping strategies that may differ between you and your caregiver.
In some cases, building a strong support system takes time, but the connections you make can be invaluable. Whether through family, friends, support groups, or your SMA healthcare team, having a reliable network can make daily life easier and provide comfort and emotional support when you need it most.
SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
