This past weekend at the University of Wisconsin-Madison Hospital they had SMA EDUCATION DAY for Parents and caregivers, headed up by the amazing SMA PULMONOLOGIST DR. MARY SCHROTH. Dr. Schroth never ceases to amaze me in her constant efforts to bring SMA clinical care to the next level. While we are all pushing along promising research to treat and or cure SMA, she is keeping our kids healthy and up to date on all the clinical information for SMA!!! Unfortunately we were not able to attend live, but they did have a live online stream so all of us at home could benefit!! They touched on everything from research, to communication devices, they also had a very informative SMA PARENT panel who gave tips and answered questions!!!! One tidbit I learned is how important it is to have a Medical ID bracelet for your sma child. When you are first diagnosed SMA throws you for a loop and suddenly you are carrying around cough assists, bi-paps, feeding pumps, ambu bags…..ect. The last thing you are thinking about is a MED ID bracelet… but we all know anything can happen and in the event of a car accident or you become ill you want everyone to know what your child has. There are so many places to purchase ID bracelets but just want to point out one, our friends at SAYWHAT CREATIONS have many cute options for your SMA child. On the front you can put Spinal Muscular Atrophy Type 1 (or whatever type your child is) and on the back an emergency phone number. This way you are assured your sma child will receive quick action to their needs. To check out all the options SayWhat Creations has click here. And the best part is Saywhat Creations donates 10% of all purchases to Sophia’s Cure for SMA RESEARCH… this is a WIN WIN!!!!

About Catherine Gaynor

Mom to beautiful Sophia.... SMA Type 1


  1. Brenda Barbernea says:

    What a great idea and i love how it supports SAYWHATCREATIONS, A boutique that has supported SMA as much as possible!

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