June 2017

My First Shot (Almost)

Today I was scheduled to get my first Spinraza treatment. I’ve been told that I am the first Medicare recipient to get treated. Because of a weird Medicare regulation, I couldn’t get treated in the new building at Stanford. Something about a requirement that wouldn’t allow me to be treated more than 200 or 300 […]

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Spinraza and Me

For those who don’t know already, I’m disabled by a neuromuscular disease called Spinal Muscular Atrophy type 2. Because certain motor neurons near my spine don’t work properly my muscles can’t get stronger and slowly atrophy as I age. This happens at different rates. Some children who have a more serious form of my disability

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