Chapter 5: A Call to Action
The good guys prepare for battle. But where is the armory?
In the 100+ documented year history of ALS, there are ZERO survivors of the disease. To put it into terms my jock mind can comprehend, ALS is undefeated. It’s UCLA basketball in the early 70’s, Tiger Woods and Michael Jordan in their prime, Alabama football pretty much every year, and Floyd Mayweather Jr. all rolled into one massive, domineering Goliath.
History and folklore alike are littered with accounts of giants too big to bring down. This is shaping up to my favorite type of archetypical story; the hero underdog. I’m very familiar with the protagonist. He used to have horrible stage fright prior to performing original music in front of a large crowds. He was a sopping wet 119 pounds at one point in high school before going on to earn a college scholarship in football. And ahead of launching his own successful million dollar personal training business, he was passed over multiple times for management positions at his former corporate club.
When I tell you that I am going to be a part of the first generation to survive this disease, I REALLY BELIEVE THAT! But I need your help.
There’s a drug out there that is CURRENTLY AVAILABLE and has been shown (in a double-blind placebo clinical trial) to effectively slow progression for ALS patients. But unfortunately this drug is still sitting in "no-mans land" awaiting FDA approval. And because of that, most doctors won’t prescribe it. And even if you are a good salesman and somehow convince your doctor to sign off on it, on a compassionate basis, like I was able to, this drug will cost me and Jamie over $5000 for a month supply. Insurance won’t cover this drug for ALS. That's not right.
How frustrating, to be David but without his sling.
Now, there is actually legislation that has been proposed that could change all this. But it requires more co-sponsors from our congressmen before it will see the floor. We need more allies to rally to our cause. KMBC stepped up to tell my story and that of our goal to get the Act For ALS to vote. Here is a link that will take you straight to an automated tool to quickly send a letter to your congressmen on our behalf. Just put “Scott’s Fight” in the subject line, and let’s flood their inboxes!
Thank you for following along in my journey but what I really need from you now is to take some action! ALS has always had the upper-hand, attacking unarmed civilians. Help me get the weapons I require to wage a fair and proper fight. Help me become a warrior!