Building Design and Accessible BathroomsWe left off when I was joining the board of directors at my local YMCA. If you haven’t read part one of...reactionscomments
Playing the Evrysdi Long GameGrowing up, it always seemed like there was never going to be a treatment for SMA aside from the normal physical therapy...reactions1comment
Accessible Bathrooms: Expressing my ConcernsLet’s talk about wheelchair-accessible bathrooms and stalls. I just had an “incident” recently at my local YMCA. I have been a member...reactionscomments
Running a Successful Business From Your PhoneHave you ever wondered, “Am I capable of being a business owner?” Living with SMA, we run into the constant challenges of...reactions1comment
Introduction to MDA and My Son's Diagnosis JourneyAfter waiting months for the results of all those tests completed at St. Christopher’s Hospital, we went back to see the neurologist...reactions1comment
Losing My Best FriendToday my household had to do something that owners of pets dread. We had to make the decision to end our dog’s pain...reactions1comment
My Thoughts on Treatment - Both Good and BadThe term that has always been used in the SMA community prior to treatment was a cure. Fight for the Cure, Cure...reactions2comments
Hiring the Right PCAI like to equate hiring a new caregiver to committing to a good relationship. It takes more time in the beginning, but...reactions1comment
Traveling with SMAWhen it came to my level of independence, I have been pretty lucky. An area of my life that was always a...reactionscomments
Regrets From a Father: Real Life Personal SMA Family DynamicsI have regrets! Not with my daughter who had SMA and passed away at 17 years old, but for myself with regrets...survivor...reactionscomments
Managing Appointments for SMASpinal muscular atrophy (SMA) can impact different parts of your health and daily life. People with SMA must see many types of...reactionscomments
Why Are You in a Wheelchair?This is the question that every person with SMA will be asked more times than anything else in their life. Parents who...reactionscomments
SMA Financial FrustrationsI 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 TeamThere 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 ParentsMike’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 JoystickLiving 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 CareerIn 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 SchoolIn the summer of 1988, we moved our family to a new home. Mike was starting 6th grade, our son Daniel started...reactions1comment
Dealing With GuiltGuilt 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 SMAAffording your spinal muscular atrophy (SMA) drugs and other treatment costs can be challenging. Luckily, there are programs that may be able...reactionscomments
