Essential Items to Manage SMALiving with spinal muscular atrophy takes a lot of preparation and planning ahead. We reached out to our team of advocates here at SpinalMuscularAtrophy.net to find out what they always... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
Staying Mentally HealthyI’m in my mid 40’s and I find it encouraging that mental health has become more out in the open. I know living with spinal muscular atrophy has probably made... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Dealing with Changes in SMASpinal muscular atrophy has a host of challenges we all deal with at some stage. While all of our journeys with SMA are very different, I have always found that... By Michaela Hollywood2 min readBookmark for laterReactions 0 reactions Comments0 comments
The First Time Pushing My Son in a WheelchairOur son was diagnosed with a neuromuscular disease at the age of 5. At that time the name given for his condition wasn’t the same as his final diagnosis. We... By Maryalice Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Comparing Spinraza® and Evrysdi®: Things to ConsiderIf you are taking Spinraza® (nusinersen) for spinal muscular atrophy (SMA), then you may be curious about Evrysdi® (risdiplam). Both therapies are available in the United States, but there are... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
Mental Health with SMA – A Cellphone AnalogyThe best way I can describe living with a chronic disease like SMA is that I am a cellphone and my disease is all of the open windows in the... By Samantha Przybylski3 min readBookmark for laterReactions 0 reactions Comments3 comments
Successful Intubation and AnesthesiaEvery two years I have to get minor outpatient surgery to change my peg g-tube. This unfortunately has to be performed in the main operating room in the hospital so... By Chaz Hayden3 min readBookmark for laterReactions 0 reactions Comments0 comments
Best Date Ideas for Interabled CouplesI’m a firm believer that dating your spouse is equally as important when you’re 5 or 10 years into marriage than it was when we were in those first months... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
Advice for Younger People with SMAWe asked our team of advocates: What advice do you have for younger people with SMA?Allie: Learn how to adapt what you enjoy doing to your specific needs. If you... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments2 comments
Speech Therapy for Children with SMAI am a speech pathologist. My daughter had spinal muscular atrophy. One of my daughter’s needs was speech therapy services. Since I was too close to this situation, I chose... By Marc Mitnick3 min readBookmark for laterReactions 0 reactions Comments0 comments
SpinalMuscularAtrophy.net Giveaway Terms and ConditionsThese Official Rules apply to any giveaway (or "Promotion") published on SPINALMUSCULARATROPHY.NET, a Health Union ("Health Union" or "We") owned and operated website. For conflicts between the Promotional giveaway article... By Editorial Team 5 min readBookmark for laterReactions 0 reactions Comments0 comments
What is Your Definition of Independence?Living with a disability can make us stubborn in our ways. I know for me it’s the inability to control what my body can do. I think what we lack... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Early Education ObstaclesGrowing up, it seemed like my parents were always fighting with the school district about something. Most of the challenges I faced as a student were physical like being able... By Chaz Hayden2 min readBookmark for laterReactions 0 reactions Comments1 comments
What Does It Mean to Be a Silent Carrier for SMA?Spinal muscular atrophy (SMA) is a rare genetic disorder passed from parents to their children. SMA affects the spinal nerves by causing them to waste away. This results in the... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Everyday LifeFor our firstborn son, the first five years of his life were pretty much routine. We were oblivious to any health problems. The only noticeable activity was that he ran... By Maryalice Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Surround Yourself With the Right PeopleHaving the right people around you in life is so vital. Especially in a world where so much is said online, and people can hide behind computers to share opinions... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
Qualities of a Good SMA SpecialistWhen it comes to finding a specialist for spinal muscular atrophy, there are many different factors that come into play. Is the personality a good fit? Is this person up... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
Patronizing CommentsI was recently on a Zoom call with other people who were disabled. One of the moderators who wasn’t disabled made a comment that drove me nuts. She said she... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
SMA Treatment AdvancementsWe asked our team of advocates: What have advancements in treatment for spinal muscular atrophy meant to you?Allie: The celebration of life. I have watched my disease take away so... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Navigating Early Intervention and EducationOur daughter was diagnosed with spinal muscular atrophy (SMA) at six months old. The doctor told my wife and me that our daughter would need early intervention training, including therapy... By Marc Mitnick3 min readBookmark for laterReactions 0 reactions Comments0 comments