Good News & Bad News

It has been quite an interesting few days  in the ALS community!  Being my normal upbeat self, let me share the good news first.  This past Sunday researchers at Northwestern University's Feinberg School of Medicine announced that they have discovered the common cause of all types of ALS.  Here's a link to the full article:
http://bostonherald.com/jobfind/news/healthcare/view/20110821breakthrough_could_lead_to_effective_treatment_for_als


"Dr. Teepu Siddique, a neuroscientist with Northwestern University’s Feinberg School of Medicine whose pioneering work on ALS over more than a quarter century fueled the research team’s work, said the key to the breakthrough is the discovery of an underlying disease process for all types of ALS"

"Ubiquilin2 in spinal and brain system cells is supposed to repair or dispose of other proteins as they become damaged. The researchers discovered a breakdown of this function in ALS patients.
When Ubiquilin2 is unable to remove or repair damaged proteins, the damaged proteins begin to pile up in the cells, eventually blocking normal transmission of brain signals in the spinal cord and brain, leading to paralysis."

While I tend to look at all proclamations like these with a very cautious eye, I am daily being persuaded that this could be the real deal.  With the cause identified, scientists can focus their efforts on finding a treatment and eventually a cure.  With positive reports coming in from two current clinical drug trials, NP001 and Dexpramipexole, and the cause identified, it is safe to say that a fresh wind of hope is blowing through the ALS community.  The FDA approval process can be agonizingly slow, especially given the limited life span PALS face, but whether or not it happens in my lifetime, finding the cure is going to happen.

The bad news is that our community has lost another champion warrior to the beast.  I did not have the privilege to meet Tim LaFollette or his lovely wife Kaylan in person, but his work through the Often Awesome web videos was simply amazing.  Tim had the fore sight to chronicle his journey with ALS starting with diagnosis and the resulting 33 episodes have been described as "Tuesdays with Morrie on steroids".  I have been humbled, inspired, humored, terrified and touched to the core by Tim's story - watch the episode below for a taste.  Tim will be greatly missed, condolences to Kaylan and the Often Awesome Army, we will never give up.