Spinal Muscular Atrophy In America: What's That?
The Spinal Muscular Atrophy In America survey is now closed for this year. We appreciate all those who took the time to take the survey.
A diagnosis of spinal muscular atrophy (SMA) can be isolating, bringing many questions to the forefront. To learn more about the challenges of SMA and to give a voice to those affected, we are conducting our Spinal Muscular Atrophy In America survey.
What is the survey about?
The survey covers basics like diagnosis and treatment experiences and dives into the nitty-gritty, like the emotional impact and the day-to-day challenges of managing SMA. We hope to learn more about all things SMA, including physical and mental health, caregiving, and impact on quality of life.
Why should I take the survey?
Each person who takes the survey contributes to a better understanding of SMA awareness and knowledge and can help others who are dealing with SMA to feel less alone. Sharing your experiences through the survey can reveal the similarities and differences between each person’s journey, and can bring greater awareness to this rare disease that affects 1 in 100,000 people.
What will the survey ask me?
The survey will ask about diagnosis, symptoms, symptom management, quality of life and relationships, healthcare professional engagement, and treatment awareness and experience. We do not require your name, address, or other personal information.
Please note that you 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 will resume where you left off.
How do we use the In America survey data?
Survey responses help us and our partners better understand the spinal muscular atrophy community. All survey responses are kept confidential, reported only in total (your specific responses will not be reported individually), and will become property of Health Union, LLC.
What happens after I take the survey?
After the survey closes each year, the Editorial Team at SpinalMuscularAtrophy.net takes your responses and creates an infographic to share the community's responses and highlight important findings from the survey.
But that is not all – throughout the year, we publish articles and videos based on learnings from the survey. We hope this survey-driven content contributes to the information available to those affected by SMA and helps them connect with those who have walked the same path.
One voice may seem like it will not make a difference, but each voice can change how others perceive life with spinal muscular atrophy and bring comfort to someone coping with a diagnosis.
Still have questions? Comment below, or email us at spinalmuscularatrophy.net for more information.
Which emotional aspect of SMA do you find most difficult?