Over the past two weeks ALS has gotten some much-needed national coverage, first from the Wall Street Journal followed shortly by ABC News. I also just completed the first round of questions for an article due to appear in July in the-scientist.com. More opportunities seem to be materializing and I will do my best to keep the momentum going to keep the message of ALS in front of the public. I would like to call upon everyone to contact their local press, mention the WSJ and ABC News articles, and tell them YOUR stories. If you think it would help to mention a relationship to me, do so and I will back you.
There were a few points in the articles that I wanted to clarify:
- I did not design the computer I use. It is a TabletKiosk Sahara Slate PC i440T with a Point Grey Flea-2 CCD camera with an infrared light and lense. The system uses the ERICA software made by Eye Response Technologies (since purchased by DynaVox). The only part of the computer I modified was my work environment and I installed certain programs and utilities which I use. I did help design the overhead mount which slides along the overhead track I use for my lift.
- NP001 is indeed sodium chlorite, but when ingested orally the acid in the stomach breaks down most of it. The most optimistic data I have seen (based on rats exposed to it in drinking water) is a maximum 30% reaching the bloodstream. I would expect that to be less, and to be variable, in most people.
- Because NP001 is already in clinical trial, I arranged the project more as an "early access" model with data-keeping as secondary.
- I have three criteria for any such projects:
- drug must be relatively safe
- drug must be inexpensive
- drug must be legal to obtain
It's very important to me that I don't recklessly put other PALS in physical, financial, or legal jeopardy with any project. My intention is to help not harm. We all already have enough problems to deal with.
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My sister lost her only child, a son, Tommy to ALS two weeks ago Tuesday. I simply do not understand why there has not been more research into this cruel disease. I think of the millions of dollars that has been spent to protect an endangered animal that could have gone to research in finding a cure for ALS. Our country has its priorities messed up...
ReplyDeleteThere is enough to go around. However, medicine in the US is too profit-driven. The pharmaceutical industry wrongly perceives the ALS market to be too small. With an incidence rate approximately that of MS, with an effective treatment the market would very quickly expand from 30k to 300k or more. The difference between ALS and MS is that MS has multiple effective treatments.
DeleteThe answer to effective treatment lies in labs around the world. We need to demand more investment in translational research to move from bench to bedside.