Hero gene prolongs life of some PALS

[rose]

This article was published right when I was preparing to move, so this may very well have already been discussed, and I just missed it is all.

BioNews - 'Hero' gene variant prolongs life for people with motor neuron disease

http://www.alsmndalliance.org/news/...creases-survival-in-motor-neuron-disease.html

 

[indigosd]

Rose, thank you for the links to these promising articles! THIS IS TRULY VALUABLE RESEARCH!

 

[halfin]

Before I was diagnosed, ALS had been mentioned as a possibility. I was worried, so I signed up with 23andMe to have my genes scanned. They produce a report telling your risk for various conditions including ALS. Well as it turned out, I was diagnosed a week later, and I didn't get my gene results until later. Turned out my risk for ALS was completely average, not high or low. So it wouldn't have told me much anyway.

However since then I have occasionally found the information useful. The article Rose is talking about identified a particular gene as extending survival. I found the article online, and here is what it says:

Amyotrophic lateral sclerosis is a degenerative disorder of motor neurons that typically develops in the 6th decade and is uniformly fatal, usually within 5 years. To identify genetic variants associated with susceptibility and phenotypes in sporadic ALS, we performed a genome-wide SNP analysis in sporadic ALS cases and controls. A total of 288,357 SNPs were screened in a set of 1,821 sporadic ALS cases and 2,258 controls from the U.S. and Europe. Survival analysis was performed using 1,014 deceased sporadic cases. Top results for susceptibility were further screened in an independent sample set of 538 ALS cases and 556 controls. SNP rs1541160 within the KIFAP3 gene (encoding a kinesin-associated protein) yielded a genome-wide significant result (P = 1.84 x 10(-8)) that withstood Bonferroni correction for association with survival. Homozygosity for the favorable allele (CC) conferred a 14.0 months survival advantage.

That's pretty technical but the point is that there is a location on the KIFAP3 gene called SNP rs1541160, and if your genetic code at that point is CC, you get a 14 month survival advantage. I was able to go to the 23andMe website and look up my gene at that point. Too bad, my code is CT instead of CC. I don't win. But still it is interesting that it is possible to do this, and as more research comes out I can check my genes against what they find.

23andMe gene scans were $400 and have now gone up to $500, and honestly I can't say that it has been money well spent. But maybe in the future the information will be more useful. Just thought I would mention my experience in case other PALS or pre-diagnosis people are thinking of trying it.