If you are living with ALS, here’s a question for you: When was the last time you spent the time to learn something? It can’t include watching a TV newscast or scanning the news feed on your mobile device. I mean quality time spent with books or…
Half a year has gone by since disgraced pharma executive Martin Shkreli was sentenced to seven years in federal prison for securities and wire fraud while heading San Diego-based Retrophin. As founder and CEO of another company (then known as Turing Pharmaceuticals), in late 2015 Shkreli bought the rights…
The 2012 comedy “Ted” contained a joke made at the expense of the movie’s villain. The joke, as expressed by a teddy bear come to life, was: “From one man to another, I hope you get Lou Gehrig’s disease.” This alarmed some ALS patients and advocates, who…
For those of us living with ALS, every day can have a stressful event. The key, I believe, is to move through the event and, if possible, remember it with humor. I recently came across a quote from the movie “Slow West” that reminds me that…
In the Ken Burns documentary, “Baseball,” during the episode titled “Eighth Inning: A Whole New Ballgame,” comedian Billy Crystal mentions in passing the (I assume fictional) name Al Smenglevitz. Years later, I co-opted the character as a coping mechanism — an alter ego. Only, I simply refer to…
My ALS diagnosis was in 2010. In the months following, I tried to learn as much as possible about the condition and how it would affect my life going forward. I discovered that medical experts knew almost everything about the physical progression of ALS and what to expect…
More than 700 medical experts, pharmaceutical executives, patient advocates, and others are expected to converge on Washington, D.C., next month for the 2018 NORD Rare Diseases & Orphan Products Breakthrough Summit. The Oct. 15-16 event, sponsored by the National Organization for Rare Diseases (NORD), takes place at the…
Sometimes living with ALS makes me feel like I’m competing in the Olympics. I wake up in the morning and wonder how my body will perform that day. Then I lie awake at night rehashing all the things that went wrong. The voices in my head often sound…
Human spinal cord neural stem cells (NSC), created using an innovative method, were seen to regenerate functional neurons in the damaged tissue of rats with spinal injuries, according to researchers. Their study, “Generation and post-injury integration of human spinal cord neural stem cells,” was published in the journal…
Love, according to the Bible’s First Epistle to the Corinthians 13:7, “always protects, always trusts, always hopes, always perseveres.” As Labor Day approaches in the U.S., it is fitting to honor the one occupation that, within the above context, may aptly be characterized as a labor of love. Thank God…
