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...reactions1comment
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactions3comments
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...reactionscomments
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...reactionscomments
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...reactions2comments
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...reactionscomments
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...reactionscomments
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...reactionscomments
Early Education ObstaclesGrowing up, it seemed like my parents were always fighting with the school district about something. Most of the challenges I faced...reactions1comment
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...reactionscomments
Everyday LifeFor our firstborn son, the first five years of his life were pretty much routine. We were oblivious to any health problems...reactionscomments
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...reactionscomments
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...reactionscomments
Patronizing CommentsI was on a Zoom call with other people who were disabled. One of the moderators who wasn’t disabled made a comment...reactions2comments
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...reactionscomments
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...reactionscomments
