Skip to Accessibility Menu Skip to Login Skip to Content Skip to Footer

Forums

Read conversations, start a discussion, and connect with others about spinal muscular atrophy.

Featured

Would you be willing to share your SMA caregiving story?

We'd love to hear from you! Are you interested in connecting with us to interview about your SMA caregiving experience? If so, please email us at contact@spinalmuscularatrophy.net. You’re also welcome...

Featured

What type of advocacy are you currently involved in or hoping to be?

We would love to hear and learn more about your advocacy efforts or goals. - Fundraising - Policy change - Research support - Community outreach - Other How did you...

Active today

Switching from Spinraza to Risdiplam

Hi, Apologies if this has been discussed.. new to forum. I have 2 children with SMA 3, age 13 and 11. They have been on Spinraza for 2 years. Considering...

Active 5 days ago

You are more than someone with SMA. Who are you?

SMA is an all-consuming condition and affects so much of our lives. Other than SMA, how do you describe yourself? What is your passion? How have you adapted living with...

Active 6 days ago

Is this SMA?

Besides having severe multilevel spinal stenosis, my MRI says There is a left paraspinal muscular atrophy. Multilevel degenerative changes with multilevel disc desiccation is seen. Is this SMA? Thanks! Alan...

Active 6 days ago

Diet and Nutrition

Hello everyone, I need advice. I'm really struggling to figure out food. I don't see any recipes I like online that are soft for me and/or healthy. I want to...

How do you find balance?

When you're ill for a long time and can't stick to the things you love doing, how do you manage your mental health? Do you find it difficult to balance...

Have you encountered challenges with your SMA treatment?

Whether it be side effects, financial, insurance denials, or complications, please share with us. We'd love to hear a bit about your treatment journey....

Community Question: What would you buy?

If you found $100 on the sidewalk and wanted to help yourself manage your SMA, what would you buy?...

Daily Routines

What is your daily routine? Have you found that a routine helps you manage your SMA? Share below....

Pros and Cons of Power Chairs

Are you new to using a power chair, or have you used one for a while? What are some things you love and some things you dislike about using a...

Self Advocacy

Do you consider yourself an advocate for yourself? If so, how did you start advocating? How has it impacted your life with SMA?...

Categories

Select a category to find topics that interest you.