While I am not worried so much about potential harm for the drug (What’s it going to do, kill me?), I do worry that if the FDS fast-tracks a drug or therapy too soon or if tons of money gets wasted on something because we rush – and perhaps after that, a discovery is made with more promise, but then the money is gone – my clamoring for something NOW might actually be harmful to the overall progress of ALS research.

I do not want my efforts to ultimately harm the big picture, and I know that you do not want that either. We just want to live for our kids, and we are willing to fight for the possibility to do that.

Thank you for being out there and sharing with all of us. I think that you and Scarlett are both beautiful and amazing.

Through your powerful writing and visceral love for your daughter (and life), I think you are winning this battle in all the ways that count.