- Sep 21, 2019
Hi everyone! My mother is 54 and was diagnosed with ALS last february. Unfortunately, she is progressing really fast. As some of you surely know, the phase 3 of SOD1 trial is on its way. And they are admitting PALS from Russia and Belarus now too! My mom is a Belarusian citizen, and we haven't done genetic tests yet, as we don't know of any relatives who had suffered from the disease. But we also don't know much about our extended family, many of them died years ago, so there still might be a chance. So she wants to do a test. The problem is that she is currently staying in China. The doctors in the lab seem to be not very knowledgeable of the disease so I want to provide them with superexact information of what we need from them. As far as I know there might be lots of variations of SOD1 mutation. Can somebody please provide a detailed description of test? That would really help a lot! Thanks!