Mile 14

History was made today, 29 September 2022 in the ALS universe. A new safe drug was approved.

But drugs are approved often, that’s not historic.

You are very right.

Here is the reason it’s so momentous; patients, family members, advocates and scientists. What is significant about these groups of people? They all aggressively encouraged the FDA to approve the drug. They relentlessly reminded the FDA to practice what they promised to do for ALS treatments; exercise regulatory flexibility. That’s all we ever asked for, given there is no cure, a chance, just a chance. So a huge THANK YOU to the FDA, it’s leadership and everyone involved therein.

150 years, and only three drugs that have been approved for the treatment of ALS. This is not a cure by far, but it is one more weapon in the treatment arsenal, and I’m good with that!

Where were you when this happened, I know where I was, downtown Milwaukee standing with the “Bronze Fonz”. Yep, this day we found ourselves in the city known for Beer, Laverne and Shirley and Cheese. I must say it is a beautiful city.

This was a pilgrimage of sorts for Meg, her father Eugene Jankowski, was born and raised here. So obviously she and Mendy enjoyed a few flights of beers. I on the other hand abstained, someone has to supervise! Besides I don’t drink and drive, lol.