Between Chapters: Short and Sweet

Levity comes in the nick of time.

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Iris loves to just sit in daddy’s car and pretend. My parents joined in for this “ride.”

Driving to my Radicava infusion today I suddenly burst into tears. I’m not ashamed to say that this is a somewhat frequent occurrence on my daily commute. Typical to my gender, I often hold back my emotions in the presence of others. It’s uncomfortable to be vulnerable. But when I’m on the road by myself, often while listening to my favorite music, I let it all out.

Today was another brutal blow to the hopes and dreams of pALS and cALS living in the United States as yet another promising ALS drug (Amylyx’s AMX0035) was denied application from the FDA (well, basically told not to bother). This is despite the fact that this therapy passed all safety metrics while also slowing disease progression and extending life by 6.5 months (a 44% decrease in death risk over placebo).

But that unfortunate news was NOT the reason why I got so emotional this morning. Rather, I was overwhelmed by happiness and love. I got to hug my daughter for the first time in three days after returning from a trip to Boston with my father in an attempt to save my life. And I just cannot wait to get back home from this damn appointment to be with her again.