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 image

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...

2 min read

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...

3 min read

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...

2 min read

Essential Items for Managing Daily Life With SMA image

Essential Items for Managing Daily Life With SMA

Living with spinal muscular atrophy takes a lot of preparation and planning ahead. We reached out to our team of advocates here...

2 min read

Finding Financial Assistance for Treatment image

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...

2 min read

A Parent's Long Journey to Finding SMA Treatment image

A Parent's Long Journey to Finding SMA Treatment

When we are given a health issue, we face a new journey. When it’s our own personal journey, we do our best...

2 min read

Creative Ways to Organize Medical Equipment at Home

Growing up, I never felt embarrassed or ashamed of the extensive medical equipment that was on display in my bedroom. A BiPAP,...

3 min read

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...

3 min read