SMA Financial Frustrations...I stopped working back in 2008. I was working for a bank in a mortgage call center. Some of you younger readers...reactions1comment
Finding the Right Healthcare Team...There are many different providers who treat spinal muscular atrophy, but certain factors like location, insurance, access, and cost can present challenges...reactionscomments
Things We Learned as Parents...Mike’s brother, Dan, was a competitive runner since fourth grade and he was Dan’s biggest fan and supporter. By high school, Mike...reactions1comment
Grips for a Wheelchair Joystick...Living with SMA, it often feels like we’re slowly losing strength or independence daily. Of course, now with the new medications that...reactions1comment
Choosing Care Over Career...In the United States, there are harsh limits placed on disabled people. Limits on how much money they can make, how much...reactions1comment
Dealing with Challenges at School...In the summer of 1988, we moved our family to a new home. Mike was starting 6th grade, our son Daniel started...reactions1comment
Dealing With Guilt...Guilt can be rough to deal with. Everyone deals with guilt on some level. I’m sure my parents and siblings have dealt...reactionscomments
Patient Assistance Programs for SMA...Affording your spinal muscular atrophy (SMA) drugs and other treatment costs can be challenging. Luckily, there are programs that may be able...reactionscomments
Living Life in a Wheelchair...Living life in a wheelchair, you often encounter and have to react to two different situations that sound the same: stairs and...reactionscomments
Shaving With a G-Tube and Keeping My Stoma Clean...Previously, I wrote an article about my love/hate relationship with my g-tube (Steve Stoma). One of the main reasons why it felt...reactions1comment
Eating with SMA...Sitting down and sharing a meal with family and friends is one of the most basic social things to do. I love...reactions1comment
The Importance of Improvisation...Mobility aids help many of us with SMA live as independently as possible. We use wheelchairs so we can get around as...reactions1comment
My Daughter Was Not Meeting Developmental Milestones...The story begins...My daughter, Jessica was born with spinal muscular atrophy [SMA]. She was a twin and my son did not have SMA. So...reactionscomments
Van-Accessible Parking...Mike usually doesn’t like to use disabled parking spaces. There are different types of disabled parking spaces: regular and van-accessible. I’ve learned...reactions3comments
Patient Lifts...Having the inability to raise oneself out of a power chair to go to the bathroom or to the bed can be...reactionscomments
Subscribe to Our Weekly Newsletters...Do you want more information about spinal muscular atrophy? Are you looking for support? Do you want to talk to others affected...reactionscomments
Hope is The Word...Reliving our family stories brings back many memories of my son's journey with SMA. The emotions felt were painful, inspirational, scary, hurtful...reactions3comments
Asking for Medical Accommodations at Your Job...Having SMA and asking for help is unfortunately just a part of our disability. Although this may be difficult at times, we...reactionscomments
A Walk With Someone New...Yesterday, a friend invited me on a walk, because she is raising money by walking for a charity. We decided to walk...reactions1comment
The Dreaded "What-If's"...I’m a 44-year-old man living with spinal muscular atrophy type 3. Looking back now, I was pretty independent as a kid all...reactionscomments
