Talking to Your Child About SMAWhen your child has a long-term illness like spinal muscular atrophy (SMA), it is normal for them to have questions. They may want to know what causes SMA and how... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
A Letter to My Parents: WE are Living with SMAParenting isn’t a job for the faint of heart. I live in a world full of adults living with disabilities, and I have the great privilege of seeing the amazing... By Megan DeJarnett3 min readBookmark for laterReactions 0 reactions Comments4 comments
Designing New Locker RoomsThis is part 3 of an ongoing story. If you haven’t been following along you might want to start with Part 1 and Part 2 before continuing on here. After... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Working with SMA I have mentioned in a previous article that I have worked full time. After graduating college, I had a hard time finding employment at first. I was still walking at... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Your Story MattersAll of us have a unique story to share with the world. And whether it’s by writing a book, starting a blog, sharing on social media, or starting a connection... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
The Number One Beach Accessory You Might Not Know AboutThe beach for me as someone with spinal muscular atrophy can be a difficult place. I often feel most disabled in this environment. The sand makes travel by wheelchair almost impossible... By Samantha Przybylski2 min readBookmark for laterReactions 0 reactions Comments0 comments
Monitoring Calories and Protein ConsumptionAfter getting my g-tube placed in 2017, food became more of a luxury than a necessity for nutrition. While my feeding tube was there to help me gain back the... By Chaz Hayden2 min readBookmark for laterReactions 0 reactions Comments0 comments
Sports and Recreation: Finding the Right FitDifferent types of SMA come with different physical abilities. Some people have a mild form of the illness and can walk. Others rely on assistive devices like walkers and wheelchairs... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
Tips on Dating with a DisabilityI know every person‘s story is different, but the common denominator is the desire to be loved in most people's lives. As a disabled adult, the majority of questions I... By Megan DeJarnett3 min readBookmark for laterReactions 0 reactions Comments0 comments
Feeling Left Behind at TimesWith most of my posts, I try to offer some kind of helpful information from my past experiences. But sometimes I feel melancholy enough where I just want to share... By Chaz Hayden2 min readBookmark for laterReactions 0 reactions Comments1 comments
Finding HopeIt broke my heart when one of my good friends' daughters was diagnosed with SMA. The diagnosis was tentative, as he was waiting for a genetic result. But I know... By Ainaa Farhanah2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 min readBookmark for laterReactions 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 Hayden3 min readBookmark for laterReactions 0 reactions Comments1 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 Noon2 min readBookmark for laterReactions 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 DeJarnett2 min readBookmark for laterReactions 0 reactions Comments1 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 Noon2 min readBookmark for laterReactions 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 Williams4 min readBookmark for laterReactions 0 reactions Comments1 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 Przybylski2 min readBookmark for laterReactions 0 reactions Comments2 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 DeJarnett4 min readBookmark for laterReactions 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 Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments