Here is what teenage ALS girls has in common:

[jethro]

link contains unsuitable sublinks etc, so use your search engine, i wont paste it.
just google:

EXCLUSIVE - The 7 mothers who lost their teenage daughters to ALS

5 months old

 

[Nikki J]

That is very sad. They had the FUS mutation. The story I believe you were reading had some sensational statements that I believe to be untrue including one “ it is estimated by 2025 1 in 25 Americans will be diagnosed with ALS”. I have never seen anything remotely resembling that. 6 years from now there will be an explosion of cases? Some believe the incidence is rising but not like that.

The article also says the answer is in researching the FUS mutation. Well, of course, if one has FUS JALS/ FALS. FUS is about 5% of FALS or .5% of all ALS important certainly and some research may carry over but it is not going to solve other forms of ALS

 

[jethro]

they probably though 1:25000 which means 4:100000. i can swallow it, cause there are from 1-7 :100000 now...
other forms? how many forms are which are no aggregation, mutation---

 

[Nikki J]

It said one in 25 in the article I found as in 4 people out of every 100 which is ridiculous.

 

[jethro]

they forgot three zeroes. 1:25 000, that is reasonably. they wrote 1:25, it is same like 4:100
when als reaches 1:10000, it is no more rare.

 

[affected]

Sorry but how could it possibly be reasonable to leave out 000?

I did read that article a while back before you posted here and completely agree with Nikki.

 

[Nikki J]

That piece was written last August. Any reputable and responsible news organization would have corrected an error. If you look you will see correction notes all the time in news stories online.

The basics facts are correct. These poor young women had the rare FuS mutation and died far too soon. Their mothers have banded together. Researchers are working on FUS and other genetic mutations

I was recently told by one doctor who works with FALS she has real hope for FALS now. We have come a long way but still miles to go

 

[Lkaibel]

There is this push to make ALS sound a lot more common than it is. I think some feel it attracts more attention and research dollars that way.

About 6,000 people in the United States will be diagnosed with ALS this year. Two hundred thousand will be diagnosed with Lymphoma. As causes of death, ALS probably ranks so far down there we can’t count it.