Notes From the ALS Front - a Column by Rick Jobus

Dear Congress, The recently enacted federal Right to Try Law (RTT) is really a “Right to Ask” law. And, for the pharmaceutical companies, it’s a “Right to Say No.” Which they certainly almost always will. Case in point: BrainStorm Cell Therapeutics pre-emptively announced that NurOwn, its ALS stem cell treatment candidate,…

ALS has been a blessing to me. You read that right — a blessing. Oh, it has been many other things: ordeal, handicap, curse, millstone, scene-stealer, tormentor, humiliator, predator, interloper, income garnisher, bully, danger, satirist, infidel, and terrorist. It strives, ultimately, to be my terminator. But, if not for ALS,…

“I’m afraid you have amyotrophic lateral sclerosis.” My neurologist continued, “Anyone can get it, even myself,” and like Charlie Brown in the classroom, I shut him off completely, reducing his vocal output to a series of horn mutes. I then went home and googled ALS. Devastated by what I…

My family recently made a welcome discovery. It turns out that home healthcare for ALS patients is covered by Medicare. The revelation came as we faced a dilemma: my care needs had eclipsed my wife’s capacity to provide them. We had wondered how we could be assured of…