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 this story, check that out first before reading... By Mike Noon2 days agoBookmark for later Reactions 0 reactions Comments0 comments
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, respiratory medications, etc. But nothing was specific for... By Chaz Hayden5 days agoBookmark for later Reactions 0 reactions Comments0 comments
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 of this Y for over 10 years now... By Mike Noon7 days agoBookmark for later Reactions 0 reactions Comments0 comments
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, “Can I get into the building? Is my... By Megan DeJarnett8 days agoBookmark for later Reactions 0 reactions Comments0 comments
Introduction to MDAAfter waiting months for the results of all those tests completed at St. Christopher’s Hospital, we went back to see the neurologist and were given a diagnosis of Friedreich's ataxia... By Maryalice NoonOctober 18, 2021Bookmark for later Reactions 0 reactions Comments1 comments
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 through euthanasia. Odie was a very old dog... By Allie WilliamsOctober 15, 2021Bookmark for later Reactions 0 reactions Comments0 comments
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 SMA, Help Find a Cure! Treatment should not... By Samantha PrzybylskiOctober 14, 2021Bookmark for later Reactions 0 reactions Comments0 comments
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 once everyone’s in the groove and comfortable, it’s... By Megan DeJarnettOctober 13, 2021Bookmark for later Reactions 0 reactions Comments0 comments
Traveling with SMAWhen it came to my level of independence, I have been pretty lucky. An area of my life that was always a little difficult was traveling. After I graduated college... By Mike NoonOctober 12, 2021Bookmark for later Reactions 0 reactions Comments0 comments
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 regrets. My daughter, Jessie, was a twin with... By Marc MitnickOctober 11, 2021Bookmark for later Reactions 0 reactions Comments0 comments
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 specialized healthcare professionals. This includes doctors as well... By Editorial TeamOctober 8, 2021Bookmark for later Reactions 0 reactions Comments0 comments
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 have children with SMA probably hope that one... By Chaz HaydenOctober 7, 2021Bookmark for later Reactions 0 reactions Comments0 comments
SMA Financial FrustrationsI stopped working back in 2008. I was working for a bank in a mortgage call center. Some of you younger readers probably don’t remember the financial collapse back then... By Mike NoonOctober 6, 2021Bookmark for later Reactions 0 reactions Comments0 comments
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. It is important to find providers you are... By Editorial TeamOctober 5, 2021Bookmark for later Reactions 0 reactions Comments0 comments
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 joined the track team as their manager. The... By Maryalice NoonOctober 4, 2021Bookmark for later Reactions 0 reactions Comments1 comments
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 are available, some of us are seeing improvements... By Chaz HaydenOctober 1, 2021Bookmark for later Reactions 0 reactions Comments0 comments
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 property they can own, or savings they can... By Allie WilliamsSeptember 30, 2021Bookmark for later Reactions 0 reactions Comments0 comments
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 4th, and Allison entered 1st grade. This was... By Maryalice NoonSeptember 29, 2021Bookmark for later Reactions 0 reactions Comments1 comments
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 with guilt over my SMA. Anytime someone close... By Mike NoonSeptember 28, 2021Bookmark for later Reactions 0 reactions Comments0 comments
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 to help offset the cost of treatment. One... By Editorial TeamSeptember 27, 2021Bookmark for later Reactions 0 reactions Comments0 comments
