They also gave information on the recently passed United States Right to Try legislation. It was informative to me as there are currently individuals trying to introduce "Right to Try" legislation in Canada. Personally, I'm not a proponent of "Right to Try", I find too many snake-oil salesmen trying to take advantage of the vulnerable. You wouldn't believe how many spam comments I get on this blog offering me a cure. They are mostly "spells" from witch doctors offering a cure from my HIV and Herpes (Don would say "UH, HELLO, ALS BLOG?!?). I do believe, however, in people having a choice in their treatment and would not oppose Canadian Right to Try legislation.
If you are interested in viewing the webinar, click on the image below.
Every month or so, I fill out an ALS Functional Review Scale and I receive an automated call to record my voice saying "I Owe You a Yo-Yo today" about 6 times, which is then analyzed by Google! As I typically do not qualify for clinical trials (usually they call for people within their first two years of diagnosis) this is a method for me to feel useful and hopefully in some small way contribute to the eradication of ALS.
The graph below is actual tracking of my personal ALS FRS results, and I'm happy to say it demonstrates slow progression (at least for now). How cool is that?