ALS is not in the top ten of diseases. I suppose that should be a positive way to look at it.
We had a local support and walk meeting this week, and our representative from ALS Ontario expained how the research is approved at various levels of the political and medical playing field.
In short, research is often piggy backed with other motor neuron diseases. MD, MS etc. Those receive the big ticket research grants due to the sheer number of people inflicted. Information is shared, so there are projects dedicated to ALS, some cross over between the other illnesses.
As with many diseases, cause is a factor, and with ALS, Parkinsons, MD, MS..it is a crap shoot.
As with any research, it is slow. How many drugs have been pulled of the market after years of testing, to find they produce other potential harmful effects?
Awareness is the key to push for adequate funding for all projects and if you look around, everyone is out there riding, walking, and bowling for a cause.
Dollars are tight, as our governments seem to spend our hard earned cash on more useless projects then we can count.
The unfortunate aspect of research, is you need someone famous to speak out to the masses and ignite the flames. Look at Michael J Fox as an advocate for Youth Parkinsons!
In the US, Ester, from the Young and the Restless, for those who watch, has a brother in law diagnosed. She has been an advocate and has been successful promoting awareness. Celine Dion's closest assistant and friend for 25 years passed away this year from ALS. Can you imagine the awareness if she was to promote and raise money for research?
Let our voices be heard, in every way possible.