SMAandNutrition.org: Calling All SMA Type I Families, We Need YOUR

I don't think anyone would argue that nutrition and proper dietary management is a critical component to any Spinal Muscular Atrophy (SMA) care philosophy. There are several options and points of view, but, unfortunately, to date there has yet to be any data driven scientific research to provide a consensus and/or a guideline on this extremely important issue.

With support from the SMA Angels Charity, the Pediatric Motor Disorders Research Program at the University of Utah has launched a new website — SMAandNutrition.org — to help SMA families navigate the important issue of nutrition in SMA patients. From now through June 14, they are asking all SMA Type I families to complete their Nutritional Survey to help them gather data about what different families are currently doing from a nutritional standpoint to help move the community forward on consensus with respect to diet. In my opinion, regardless of your stance on the nutrition issue, this is a great step in the right direction. But the study is only going to be useful if SMA Type I families get behind this and actually submit their nutritional data through the survey.

How can you participate? It's pretty simple and the entire process, from obtaining a login and password to filling out the entire 3 day nutritional survey, took me about 30 minutes of cumulative work. Here's how you can help:

  1. Click HERE to email [email protected] and request a login and password for the SMA Nutritional Survey.
  2. They'll send you some required disclosure paperwork to sign and return via fax/scan.
  3. Read it, fill it out, sign it, and fax/scan it back.
  4. They'll send you your login and password for the website.
  5. Go to SMAandNutrition.org, click on “click here to login”, and follow the instructions on how to fill out the Survey.

That's it!

Thanks so much to SMA Angels Charity and the Pediatric Motor Disorders Research Program at the University of Utah for being proactive in creating a simple way to help push the community in the right direction on this critical issue for the care of our children.