Prevalence of ALS

[quadbliss]

This may seem like a hard way to do it, but if more people chose life extending measures, and there were more of us "living" with ALS, the drug companies would have more incentives to do research. There would also be more ALS "victims" visible in the community.

Mike

 

[joelc]

I totally agree with Mike.

I keep reading how there are as many PALS diagnosed each year as MS but we die too soon so there are less of us living at any given time as compared to MS.

So......like Mike said....let's choose to live by getting a PEG and VENT when needed.

 

[bucky]

fiqures on A.L.S.

My broter-in-law lives in a small community. Population is20,000. He informed me on his last visit that he knew of three people who have been diagnosed with A.L.S. in his community.Just this year. That certainly challenges the 1 in 100000 statement.

 

[ltr]

My community has a population of 30,000 and there are 2 PALS that I know of this year, both recently deceased. I wish there was a way to find out if there is more, but there is no MDA, clinics or support groups here.

 

[MtPockets]

Finally a National Registry for ALS

Just saw this message about a National Registry. It's about time.

The ALS Association secured a tremendous victory when the House Energy and Commerce Committee, Subcommittee on Health, unanimously passed the ALS Registry Act on July 19. The Subcommittee’s action is one of the most important steps in the legislative process and one that demonstrates that the bill, which would establish a national ALS registry can pass Congress this year. Since the ALS Registry Act was introduced in May, more than 265 Members of the House and over 40 Senators have signed on as cosponsors an incredible show of support in such a short period of time!
The ALS Association would like to thank advocates for their outreach to Congress over the past several months. It is clear that Congress is listening. And that’s why it is critical that everyone in the ALS community continues to actively participate in The Association’s advocacy efforts.



God Bless ALL
Capt AL

 

[guwainengle]

I met with my local Neuro yesterday-- he said so far this year he has had 3 people go on to be tested for ALS. All 3 were confirmed. My community is 50,000. That would make the number 6/100,000 so far this year just with my group-- There are 4 Neuro groups in Altoona. I am sure there are more. Seems like the ratio is much higher.

G