JKR Updates

May is ALS awareness month.  As such, a few folks from the Facebook ALS group who are local to the area engaged local media about the struggle to acquire access to experimental treatments.  One member in particular, Patricia (or Patty) tweeted Sheree Paolello incessantly until Sheree set up an interview with Patty and her kids.  Patty got a few others involved to help tell the story of how the FDA and congress has let down the ALS community.  The following links to the story that aired on the six o-clock news: https://www.wlwt.com/article/als-patients-fight-for-more-trials-as-there-s-few-drugs-available-to-treat-deadly-disease/36562722 UPDATE: For a continuation of the story, including a full transcript and raw footage, use this link: https://www.wlwt.com/article/dying-waiting-als-patients-fight-for-more-trials-as-theres-few-drugs-available-to-treat-deadly-disease/36563451 If you would like to help us battle, you can contact your congressmen here: https://iamals.org/...

 by Kevin Another ALS group cross post ... Do not go gentle into that good night. Rage, rage against the dying of the light. These last two lines from Dylan Thomas's very famous poem have  been rattling around inside my head a lot recently. Being neither literary scholar nor poetry aficionado myself, I had to actually look up where they came from. I was under the mistaken impression they were Shakespeare. "Surely from Hamlet," I said to myself as if I could name more than a handful of his plays. Regardless, the words have been haunting me. As I sat and reflected on them, with an eagerness to know why they were put into my head, I was struck by three images or thoughts. In hindsight, after having to research the poem by Thomas a little, the first one seemed obvious to me. The other two however ... less so ... and are in fact the impetus for this post. Do not go gentle into that good night. Rage, rage against the dying of the light. The Pulitzer-winning Irish poet, Paul Mul...

by Kevin I took a stab at a limerick in my tribute to Steve Martin and really enjoyed it. Having never written poetry before, I wanted to try something else. I couldn’t really keep to a strict rhyme scheme or meter, but the words just started spilling out haphazard like. I guess that makes it an ALS rap. (Though I'm not a big fan of rap, lol!). I’d say that I won’t quit my day job ... but I already did, so ... if this ALS gig doesn’t pan out, I don’t know what I’m gonna do! Un-rapping Presence Amyotrophic lateral sclerosis, Not quite as bad as chronic halitosis. Ultimately total muscular paralysis With no means for any dialysis   Of the toxins, head to moccasins, Body permeated and breathing overrated. Amyotrophic lateral sclerosis, Short changed life at time of diagnosis. In constant danger of rash depression   A guilt filled burden disorients impressions   Of self worth, even life on earth, Self realizing found agonizing. Amyotrophic lateral sclerosis, Eyes clamped tigh...