As a person living with ALS I like to keep updated on the latest clinical trials and what is happening with research. The ALS Therapy Development Institute is a US nonprofit biotech research organization.
On June 13, 2018, Dr. Steve Perrin of ALS TDI hosted a midyear ALS research review webinar. This session specifically outlined what people should be on the lookout for in 2018, including information on Masitinib, CopperATSM, NP001, NurOwn, AT-1501, and other potential treatments. ALS TDI also updated us on certain clinical trials recently completed I have been following, that read out negative. Tirasemtiv was one, which I almost participated in but was unable due to travel constraints.
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.
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.
I am participating in ALS TDI's study called the Precision Medicine Program (PMP). If you are living with ALS and would like to contribute to much needed research, you can do so from the comfort of your own home! It is easy to sign up, and fill out the questionnaires.
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?
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?
The ALS Therapy Development Institute is searching for more participants for their Precision Medicine Program. If this might be right for you check out their website by clicking the button below.
For information on Clinical Trials in Canada, click on the button below.
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