- Aug 10, 2015
I was diagnosed with ALS over two years ago. I am still standing and doing most things on my own. The Department of Veterans Affairs Canada recognizes ALS as service associated, and they have been very helpful and financially supportive. The 90% of us that have the sporadic kind of this disease number about 3000 in Canada and 30,000 in the USA. I was wondering if anyone with ALS or their families on their behave had been contacted directly by any research people looking for personal history and medical information. I may have missed something like this in the pass but no one out side of my neurologist has contacted me since being diagnosed. With our low numbers in both countries I would like to see some of the ice bucket money go a current medical questionnaire administered by a research company. Questions regarding childhood diseases, difficult births, physical traumas, acquired viruses, work environments, and any other questions that the company would deem pertinent. Who knows how many spikes on a bar graph might warrant further research and direct the limited monies to these common results. Going a step further would it really cost that much now to collect our DMA and catalog the results for all medical researchers to use. Do you know of any questionnaires like this or the collection of data directly from ALS patients that I have not heard about. If so please let me know, thanks.