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How Do I Connect With Other People in the SMA Community?

Spinal muscular atrophy (SMA) is a genetic disorder where muscles become weak and waste away. Our goal at is to connect people living with SMA and their caregivers with  each other and build an online community that helps bridge the gap.

How do I connect with others on

Our Community Hub is a great place to see what people are talking about in the SMA community. Here, we share trending topics and the latest updates, and we have a spot where you can connect with other members. It's our one-stop shop for all things about living with SMA!

Most people also start by reading our articles about life with SMA. Almost all the articles on this website are written by someone with SMA. Additionally, our Editorial Team brings the latest news and research updates to the community.

By providing your email address, you are agreeing to our Privacy Policy and Terms of Use.

Stories, forums, and more

Articles are just the beginning!

Everyone who is affected by SMA has their own unique story to tell. In our Stories section, anyone can share what their experience with SMA has been like as well as read stories from other community members.

Forums are another way to dive deeper into a conversation geared around a specific topic. You can use forums to ask questions you may have about SMA, disability, or SMA’s treatments. Reaching out on forums is a great way to get answers to any of your “is this normal?” questions and hear directly from those who also have SMA. For example, there are forums on:

Our contributor team at also writes relatable articles about life with SMA. If an article strikes a chord with you, you can feel free to comment and share your thoughts.

What if I want to communicate privately?

If you are concerned about privacy, it’s easy to stay anonymous on by choosing a username that does not reveal any personal information.

Creating an anonymous username

Choose a username that does not use your first and last name or any nicknames that might easily identify you. Then register following these few simple steps:

  1. Register as a member
  2. Enter your anonymous username.
  3. Enter your email address. Your email will not be visible to other users on
  4. You will use your email to log in to your account and receive your weekly newsletter.

Using anonymously

Once you log in using the email for your anonymous username, you will be able to participate on anonymously. You can share as much or as little as you want about your experience with SMA. If you choose to remain anonymous, you will want to make sure you do not post anything that includes personal information about your identity. Some examples might include:

  • Your location (generally, mentioning your state or country is fine!)
  • Full names of your family members or friends
  • Your place of employment
  • Detailed personal or medical information

Thank you for being a member of We hope you enjoy connecting with others in the SMA community!

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