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

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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...

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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...

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...

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Doctors won’t address my sma

So, I was reading my mri report and it says I have mild to moderate paraspinal musculature atrophy. You can clearly see atrophy in my right arm. After bringing it...

Welcome to the spinal muscular atrophy community!

Welcome to our community! Please introduce yourself and tell us what has brought you here....

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...

Advice for First Time Living Independently/Managing PCAs

Hello! I am a college student and will be living independently with just PCAs soon for the first time. I am very nervous about having to manage PCAs by myself...

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...

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...

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...

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?...

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