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Navigating Care and Treatment Options for SMA

“Growing up, I hadn't always had someone to look up to that looked like me. At times, I felt isolated. Check out the resources below – I hope they help.”

— Allie Williams
SpinalMuscularAtrophy.net
Patient Leader

My Thoughts on Treatment - Both Good and Bad

The 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...

A Village of Healthcare Professionals

We 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...

What to Bring to the Hospital

Previously 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...

Essential Items to Manage SMA

Living 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...

Finding Financial Assistance for Treatment

Many 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...

Finding the Correct Treatment Journey

When 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...

Hiding Medical Equipment

Growing 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,...

SMA Treatment Advancements

We 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...