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

Accessibility Etiquette

What guidelines need to be written in an “accessibility etiquette” guide? What drives you crazy about the way people interact with you as someone with a disability? How do you...

Awareness Month 2023 Spotlight: Your SMA Story

What brings you to our community? Do you identify has a caregiver, patient, or health care provider? Use this forum space to connect with others. Join the conversation!...

Have you experienced thoughtless comments recently?

One of our patient leaders, Mike, shared in a recent article that he's heard thoughtless comments from folks about being in wheelchair. These comments really strike him the wrong way...

Awareness Month 2023

If there was one thing you'd tell someone about SMA, what would it be? Do you wish there was more awareness around this rare condition? Or do you wish there...

Tips on Speaking Up!

How do you speak up for yourself? Do you rely on others to help you? Share some tips for others living with SMA on how they can speak up for...

Accessibility Issues

Have you run into recent accessibility issues lately? Maybe trying to get into a store that didn't have a ramp for your wheelchair? If so, how did you handle this?...

Working with Nonprofits

Do you have experience working with nonprofits? Have you been able to receive funding through them for assistive technology or something else? Begin the discussion below....

Are You in an Interabled Relationship?

What is your experience like being in an interabled relationship? If you need inspiration, read Suzanne's perspective: https://spinalmuscularatrophy.net/living/interabled-relationships Share below!...

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...

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