Our next meeting is coming up soon! 10AM-12PM this Saturday, February 2nd Swedish Medical Center, Room PINE B (501 E. Hampden Ave., Englewood, CO 80113) We hope to see you there, and if you can’t make it this time we hope to see you at our April meeting!
Did you know there’s a children’s book about myositis? We just came across this project between cartoonist Simon Chadwick and MSG, the Myositis Support Group (UK), and HAD to share it! Click here to read Simon’s blog post about their 2011 book launch. The book sounds incredible to us – how reassuring for JDM children […]
So our last post about sleeping positions reminded me of another gadget we love! While Mo was losing muscle mass back in 2007, he began to be confined to either his lift chair, wheelchair, or bed. Since his mobility and strength were so limited nights were particularly bad for him to get comfortable. Plenty of […]
Who DOESN’T want to sleep better at night?
There will be a live discussion on TMA’s website: Acthar for Myositis – Dr. Todd Levine HAS BEEN RESCHEDULED TO: TUESDAY FEBRUARY 12TH 2PM EST (NOON/12 PM Mountain). Acthar, the only FDA-approved drug for myositis, has been available to treat myositis for years, but just recently has drawn attention because of Dr. Levine’s small study […]
It’s been one of those weeks. Our 3-year-old son, Conor, came down with croup and the day we took him to the doctor was the day I was scheduled for a root canal. Conor got a script for some steroids to help the inflammation in his throat and we cranked up the humidifier. We were […]
Look what we just got in our mailbox! Here’s another magazine that we wanted to tell you all about – Quest magazine. Quest is put out by MDA (Muscular Dystrophy Association) and features articles about recent research, living with muscle disease, and a whole bunch more! Quest is celebrating its 20th year of publication – […]
The other day I was talking with some of our Friends with Kids about how to measure parental success (segued from our conversation about potty training). Sure it’d be nice for Conor to grow up to be a doctor, scientist, or world leader… but I’ll have done my job if he is kind, educated, giving, […]