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...Bookmark for later
A Village of Healthcare ProfessionalsWe quickly needed a village of professionals. Our daughter, Jessie, was born with spinal muscular atrophy (SMA) back in 1974. We quickly realized that we needed to plan for a...Bookmark for later
What to Bring to the HospitalPreviously I wrote about preparing for surgery and the considerations surrounding anesthesia and intubation. But when you have SMA there’s unfortunately so much more to think about and pack when...Bookmark for later
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...Bookmark for later
Finding Financial Assistance for TreatmentMany illnesses, such as spinal muscular atrophy, come with steep price tags. Once you have a diagnosis, navigating treatment expenses can be challenging. Insurance plans cover some expenses. But out-of-pocket...Bookmark for later
Finding the Correct Treatment JourneyWhen we are given a health issue, we face a new journey. When it’s our own personal journey, we do our best to get the right answers and treatment. We...Bookmark for later
Hiding Medical EquipmentGrowing up, I never felt embarrassed or ashamed of the extensive medical equipment that was on display in my bedroom. A BiPAP, suction machine, air concentrator, cough assist, pulse-ox monitor,...Bookmark for later
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...Bookmark for later