We’ve just launched a survey to help determine the value and success of our family support and patient services programs. This survey is open to individuals affected by SMA, as well as parents and grandparents of those affected by SMA.
Over the next several months, we’ll be evaluating which programs should be kept, and which should be expanded. We’ll also be looking for areas where new programs can be created to better meet the needs of our families.
We are seeking feedback on the following:
- Newly diagnosed care packages
- Newly diagnosed information packages
- Radio Flyer wagons
- The Annual SMA Conference
- Directions
- SMA Care Series Booklets (Breathing Basics, Nutrition, Understanding SMA, etc.)
- Cure SMA equipment pool
- SMA information for medical providers
- Local Cure SMA chapter support
- SMA Community Connections social networking site
- Cure SMA Facebook page
- Cure SMA eblasts and other email communication
This survey can be completed anonymously, or you can request a response to your comments. You can also include your email at the end to be added to our email list, but we will not use your personal data in reporting these responses.
Please take a few moments to complete this survey. For more information on the survey or on our programs, please email [email protected].