There have been amazing advances in care options for children with SMA in the past few years. Two major contributions are advancements in respiratory care and nutritional management. Improvements in respiratory care have been clearly defined but there is still much to learn about nutrition. SMA Angels Charity is funding a nutritional study in collaboration with the Pediatric Motor Disorders Research Program at the University of Utah. The purpose of the study is to investigate the role nutrition plays in SMA. In conjunction with this study we are asking families to participate in a nutrition survey. Many of you have been very diligent and resourceful in your pursuit of good nutrition. Your input could be very helpful in our search for answers..
The Nutritional Survey
Thank you for your interest in the SMA Nutrition Survey. This survey is funded by the SMA Angels Charity in collaboration with the Pediatric Motor Disorders Research Program at the University of Utah, Cincinnati Children's Hospital Medical Center, and the University of Wisconsin American Family Children's Hospital. The goal of this survey is to bring more attention to SMA and nutrition.
1. The survey will provide a snapshot of the Type I SMA diet practices of the families that participate in the survey.
2. The survey will raise awareness of healthcare providers including registered dieticians, about the role nutrition plays in SMA.
3. The survey will guide the design of future studies of nutritional management of SMA.
Help us reach our goal of 100 participants. Fill out the survey today!
Contact firstname.lastname@example.org for more information on the Nutrition Survey and how to obtain a login.
**Please Note: Ideally, we’d like all participating families to fill out a detailed dietary record when they submit answers to the nutritional survey. The ultimate goal of this website is to serve as a tool to help provide feedback to families about their child’s diet, resulting in a report about possible nutritional deficiencies and recommendations that you can share with your local dietician and care providers. However, depending on how many responses we get to this initial request, dietary record analysis may be delayed. During this initial launch period, we hope to assess how useful a tool this may be by assessing the interest of the community in this project. Ultimately, this project will only be successful if we get a majority of the community participating. Your participation is greatly appreciated!
We have provided a link on this site to our nutritional guidelines for SMA patients on the University of Utah School of Medicine research website. These guidelines need to be refined by real data from SMA patients. Participation in the survey requires a login and password. In order to receive login information for the website, SMA patients must be enrolled in our IRB approved research study “Clinical and Genetic Studies in SMA” which allows us to collect data about you or your child’s experiences and medical issues in living with SMA. Participants or their parent/guardian must sign a consent form to allow us to contact you to ask additional questions about you or your child’s medical history. It is not necessary to participate in the full study; you may elect to participate just for the nutritional part. To obtain a login, email email@example.com or contact the Pediatric Motor Disorders Program research office for more information at 801-585-9717.