Response-able

I was recently alerted to a blog called Science-Based Medicine which had a post that was rather critical of me. The post was written by David Gorski, a managing editor of Science-Based Medicine. If you read the post, you can probably understand why I took a little umbrage to Dr. Gorski's characterization of my efforts. Below is my response to him, shared here for my readers' convenience.

Role Model

A few days ago, Matt White, who lives with ALS, addressed the Butler NCAA basketball team prior to their Final Four victory over Michigan St. Normally I don't care about basketball (I am a hockey fan) but a Facebook friend posted the Youtube link above and I viewed it. The thing that struck me about Mr. White's address was his promotion of Sir Ernest Shackelton as a role model. If you don't know who he is or don't know his story, please take a moment to read the previous link (most notably the portion on the Trans-Antarctic Expedition). Sir Ernest is a perfect role model for PALS because of his dogged determination, his cool ability to make rational choices in grim situations, and his use of those characteristics to survive a lethal predicament (multiple predicaments, actually). Not only did he survive but he ensured his men would as well. Contrast the experiences of Scott and, worse, Franklin. Even though Shackelton was forced to abandon his original goal, he achieved an even greater goal by surviving. I would like to thank Mr. White for including Sir Ernest in his address and would like to concur. Even though PALS may be forced to abandon their goals, it is my hope that many can join me in "pulling a Shackelton" and doing what is necessary to survive an impossible situation.

Letter from Lou

I recently received a handwritten letter from Lou Gehrig. Obviously it was not addressed to me as the people responsible for creating me had not yet themselves been created. But it does give an intimate glimpse into the life of a remarkable man (even without the disease his accomplishments are legendary). I was struck by the proof of his equally legendary kindness and generosity, and hope to approach that in my own life as I struggle with fellow PALS to achieve the goal that eluded Lou.

09/12-10/29/2009

10/29/2009 happy birthday Internet! I am proud to have known you before the web became your most prominent feature. 10/06/2009 The site was down last night and this morning. We increased our allowed monthly bandwidth and it was created as a new account rather than credit to our existing. Once it was cleared up it took overnight for the servers to sync. Joan did a credible job as a DNS administrator! 10/01/2009 It's Hocktober! I'm excited to the point of levitation. Unfortunately this will be the first season I will not attend any games in person, but this is clearly the reason Philo Farnsworth invented TV! Go Sharks! 09/23/2009 I wanted to thank everyone who has donated so far, and to reiterate that no amount is too small (even $5). I have been asked about the Paypal buttons. The first is a user-defined amount and the second is $25/month for 24 months. I also wanted everyone to know that I have left no stone unturned. I was diagnosed by the ALS teams at both UCSF (who follows me) and Mayo Clinic. I was even tested for an extremely rare bacteria possibly acquired during a surf trip in the South Pacific. I appreciate your concerns and your questions and am happy to share my knowledge and experience. Thank you all again. 09/22/2009 Busy day. First, the Sentinel published a follow-up to the story last year, and yesterday a clinical trial I have been monitoring for two years finally got FDA approval. I have read the published pre-clinical animal studies and had the pleasure to converse with the CEO via email. i am not expecting a miracle but am anxious to see what happens regardless. Note that I am geographically unable to participate... 09/19/2009 Good news! I got picked up by the Huffington Post. 09/16/2009 we finally got the Paypal buttons up! It is quite a bit trickier to get that going (especially for a site like this) than one might think. Thanks to all of you who have already responded. Please spread the word. We should be able to populate the Photographs page tomorrow. I will sneak a few from my Facebook page... 09/12/2009 Hello and thank you for visiting. I will update here periodically to give an idea of what this experience is like, try to publicly answer questions thrown my way, and announce important new research in the quest for a treatment and/or cure. Older posts will be archived in the future as we change and improve the site. Please check back often and don't hesitate to ask me a question; I spend a lot of time on research and enjoy sharing what I learn.