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Spinal Muscular Atrophy In America: What's That?

Last updated: January 2023

A diagnosis of spinal muscular atrophy (SMA) can be isolating, bringing many questions to the forefront. To learn more about the challenges of living with SMA, we are conducting our In America survey. By taking our survey, you can bring awareness to the realities of life with SMA and help others feel less alone.

What is the survey about?

The survey covers “basics” like your diagnosis and treatment experiences, but also dives into the nuances of SMA, like the emotional impact and day-to-day challenges. In addition, you’ll have the opportunity to not only tell us about SMA but also any other conditions you are living with and how each impacts your life.

Why should you take the survey?

Each person who takes the In America survey contributes to a better understanding of SMA as well as other health conditions. With better knowledge, we can help others who are navigating health challenges feel less alone. We hope to capture a full picture of all aspects of your health experiences and bring greater awareness to conditions that may be misunderstood. Sharing your experiences through the survey can reveal how similar each person’s journey is, as well as the differences that make each journey unique.

What will the survey ask me?

The survey will ask about different moments of your journey with SMA, including:

  • Diagnosis
  • Symptoms and symptom management
  • Quality of life
  • Treatment awareness and experience
  • Other diagnosed conditions

We do not require your name, address, or other personal information for you to participate. You also do not have to take the survey all at once. Feel free to bookmark the survey in your Internet browser and return when you are able. You may continue where you left off.

How do we use the In America survey data?

Survey responses help us and our partners better understand the SMA community. All survey responses remain confidential, reported only in total. This means your specific responses will not be reported individually. All information will become property of Health Union, LLC.

What happens after I take the survey?

After the survey closes each year, SpinalMuscularAtrophy.net will share the responses back to the community and highlight important findings from the survey. You can read the latest In America survey findings in "SMA In America: Results from Our 2022 Survey."

But that is not all. Throughout the year, we publish articles and videos based on what we learned from the survey. We hope this survey-driven content contributes to the information available to those affected by SMA and helps you all connect with others who walk the same path.

Sharing your story can make a difference, and we believe each story can change how others understand life with Spinal Muscular Atrophy.

Still have questions? Comment below, or email us at contact@spinalmuscularatrophy.net for more information.

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SpinalMuscularAtrophy.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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