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Forums

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

Accessibility Challenges

Have you faced accessibility challenges lately? Maybe when trying to go out and do something social? We want to hear your stories here. Share below....

May is Mental Health Awareness Month!

It's ok to not be ok. It's valid to feel all the highs and lows that life hands you, especially when living with a rare disease. How has your mental...

Self pleasure tips

Hello. Please delete if this isn't appropriate, but I was just curious what y'all do to help yourself when you're in the mood?...

Sma led dync1h1 mutation

Hello, I have several dync1h1 mutations and i am looking for expert who can confirm if they are pathogenic (report says acmg likely pathogenic) Thanks...

Some tips for using and purchasing assistive equipment are ___________.

Fill in the blank! What is your experience with purchasing assistive equipment? Do you have any fears about using them? Are there certain wheelchairs or assistive tools that have helped...

Welcomed Support for Caregivers

What kind of support do you find useful as the caregiver of someone with SMA? Who gives you that support and how do you ask for it?...

Your Heroes

Tell us about the person who has helped you the most as you've navigated living with SMA. Who has been your hero?...

Body Image

What concerns do you have about your body image or perception? Is your perception accurate or do you have an image of yourself from a younger time? How does disability...

Will you take our 2023 In America survey and help others understand the true impact of SMA?

To better understand the patient experience and realities of SMA, we are fielding our 2023 SMA In America survey. By taking this anonymous survey, you can help everyone better understand...

A Challenge I've Recently Overcome Is ______________

Fill in the blank. What is a challenge you've recently overcome while living with SMA? How would you encourage others who are currently facing challenges?...

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