I am waiting for you to practice what you have promised… regulatory flexibility toward ALS treatment’s. I know and understand you have so many priorities, but I hope you understand that it’s very much a priority for me. You see it’s very personal to me, my family and every person afflicted.

I get it, although we are dying, you hold true to your practice of protecting us from potential deadly therapies. I snicker, well because as you know… we are already dying. I’m being polite, obviously.

In the turbulence of delay after delay, the wake takes it’s toll on our hope, bodies and minds. Not to mention our families hearts; so we wait.

However while you deliberate and decide our fate, we will continue to live in spite of ALS. We will continue to encourage, press and help you understand the human price of the science. We, the person with ALS, are the currency; what value do you assign to us?
As Lord Farquaad once said…
“Some of you may die, but it’s a sacrifice I am willing to make.”

I jest of course, I can because I’m on the inside.

I truly respect the very difficult task you have been charged with, but could you try being a bit more flexible, maybe just a skosh.

JR