What we know... or don't know.

On Thursday, Jon and I were able to attend a research forum on ALS with some top ALS researchers from around the country. The format was loose - all question and answer - but interesting. Mostly, they confirmed what we already knew... that they don't know anything. But here are the things I found interesting.

1. The only treatment for ALS, Riluzole, was discovered in the 90's and extends life expectancy by an average of a few months. Jon has been taking this since last summer. 
2. The ALS community of researchers is getting close to discovering the cause of ALS in a small percentage of patients. For the other 95%, they still have no idea.
3. Researchers are very focused on better shared databases to expedite research and get better, faster results. 
4. The most promising potential treatments for ALS in the short term are linked to irregular protein clumps that are present in ALS patients. There haven't been any human trials yet, so this is probably still pretty far off.
5. There is a study starting at Mayo soon that Jon signed up for months ago. They have way more people signed up than they have slots for...pray that Jon can participate, please! It is a stem cell trial wherein they take the patient's own tissue, manipulate it and inject it into the spinal fluid. That may not be quite right, but close. 

So, the moral of the story is, researchers really don't have any more answers or treatments than they did 20 years ago. But they're getting closer? Let's hope that Ice Bucket Challenge pays off!