If you or your child has SMA, you’re going to need professional caregivers at some point. There are many ways to go about this process, as some SMA individuals prefer to only work with friends and family members as their PCAs, which is a system that works for many. For…
The ABC sitcom Speechless, which premiered in 2016, has been discussed widely among various disability communities since its debut. Beyond the fact that it is about a family whose eldest son has cerebral palsy and uses a wheelchair, the show is not afraid to tackle subjects…
One of the best resources for SMA individuals, parents and families is the vast amount of disability literature available to the public. There are many successful SMA writers whose stories provide insight into living with this condition, and also advice for overcoming the numerous challenges that come with it. Three…
A few weeks ago, I wrote about how my Echo Show from Amazon Alexa has significantly increased my independence, particularly when I’m at home. Recently, my editors here at SMA News Today contacted me about several Echo Dot devices they had to give away…
If you are able-bodied and you have a friend or family member with SMA, there are some important things to keep in mind in terms of how you can be supportive. Maybe you recently became friends with an SMA individual or you have a family member who was recently diagnosed.
Carson Berry is a Junior at Coastal Carolina University studying marine biology. Berry also has SMA type 2, and in recent years, his condition has taken a significant toll on his arm strength and upper-body strength. Whereas he used to have enough muscle strength to lift light objects and slightly…
The other day Facebook reminded me that a year ago I gave stand-up comedy a shot at an open mic night. My local comedy club does open mic sessions every week, and since I have a few comedian friends who had been encouraging me to try it…
Purchasing a new wheelchair is no easy feat. In addition to getting your insurance provider to cover the cost, you also have to make sure that the chair you are acquiring will meet your needs and has all of the proper accommodations. Read this article from the Washington Post by…
Living with SMA no doubt presents numerous challenges, but as they say, “where there’s a will, there’s a way.” A good education is just as important for SMA patients as it is for able-bodied students. Many go to public school from Kindergarten to high school, and go on to graduate…
Since April, I’ve been writing this weekly column, and I’ve enjoyed every minute of it. Telling my story here on SMA News Today and sharing my thoughts on a wide range of topics has been liberating, rewarding and it has allowed me to connect with others…
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