Old 08-10-2015, 09:09 PM #1 (permalink)
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Default ALS patient Commonalities collection

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.
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Old 08-10-2015, 09:46 PM #2 (permalink)
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Default Re: ALS patient Commonalities collection

There is the ALS Registry in the US which we enter our data into it. Don't know anything about Canada and ALS.
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Old 08-12-2015, 01:13 PM #3 (permalink)
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Default Re: ALS patient Commonalities collection

ALS Reversals


ALS Reversals

Dr. Bedlack - head of Duke ALS Clinic

... hopefully one of those works! I think you ask a really good question, FRUSTRATED, and wish you the best of luck!
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Old 08-12-2015, 07:43 PM #4 (permalink)
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Default Re: ALS patient Commonalities collection

I think looking for commonalities among all PALS is an exercise in futility because it is pretty much agreed by experts that ALS is a collection of different disease with presumably different causes and ultimately different cures. Recent research has shown differences on a cellular level between c9 PALS and others. FALS is the extreme and obvious example but is there any reason to believe the 90 percent or so of PALS that are SALS are the same? Yes we all share signs and symptoms but I think until they start finding ways to distinguish between different phenotypes and genotypes and targeting treatment we are going to continue to see failures in trials. Alstdi is trying to look at this. There were still a few openings last time I checked in their precision medicine program. I heard a rumor of another multicenter study to be announced shortly
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Old 08-12-2015, 08:39 PM #5 (permalink)
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Default Re: ALS patient Commonalities collection

my husband just signed up for a study called ARREST ALS. it is for identifying ALS risk factors. the study is through the Columbia University but is done via phone interviews and maybe a saliva sample and urine sample for DNA. 1-855-STOP-ALS. Info for anyone who may be interested. The clinic gave us the pamphlet.
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Old 08-12-2015, 09:27 PM #6 (permalink)
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Default Re: ALS patient Commonalities collection

So many of our PALS stories start out with "I was an athletically fit person." I never saw any PALS write "I was a couch potato."
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Old 08-12-2015, 09:39 PM #7 (permalink)
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Thanks for the video, best I have seen and most encouraging. I will definitely be joining Patients Like Me, thanks again.
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Old 08-17-2015, 09:51 AM #8 (permalink)
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Default Re: ALS patient Commonalities collection

Most welcome, sir.

I believe another international program is Project MinE which can be found at Home - Project MinE

A group of folks I just started following on Facebook is HOPE NOW FOR ALS. They are more activist based, but very informative on all fronts and pushing for a great cause (which I also believe to be an international focus).

Nikki J is the most informed member I've seen in this forum, so she can correct me if I've spoken incorrectly on any of the above.

I truly wish you all the best in your search, my friend!
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