sod1

Hi: I haven't posted much as it's been a whirlwind following my best friend and cousin's death last year. He was diagnosed with a genetic form of ALS. Apparently the gene responsible is called "SOD1." I also have the gene. I'm in my mid 40s. At the time of his diagnosis, I had my blood...

The researchers saw a 50% extension of survival in mice: French scientists win $1 m. for results of treatment on mice with ALS - Business & Innovation - Jerusalem Post An independant study in Boston confirmed the findings too: Prize4Life Announces $1 Million ALS Treatment Prize Winner

My husband Jon just received his confirmatory bulbar ALS diagnosis at the University of Rochester today. He has 3 relatives on his fathers side (2 female first cousins of his father and a child of one of the cousins) who had ALS. My mother in law does not have specific details, but knows they...

Hello all, My name is Josh. And there's familial a lesson my family. My mom is diagnosed with it. My grandmother died from it. My great grandfather died from it. And my great great grandfather died from it though on his birth certificate it says creeping paralysis. My mom also has a cousin that...

Hi All, Yesterday my husband was diagnosed with a SOD1 mutation in exon 3, resulting in a N65S novel. The genetic's doctor said he has a mild case of ALS, so his condition is under the ALS umbrella but not the Classic variation. He has been progressing very slowly and only in the lower limbs...

..haven't been on this forum for a while so not sure if this has been posted. If not, interesting article: Actions of the antihistaminergic clemastine on presymptomatic SOD1-G93A mice ameliorate ALS disease progression | Journal of Neuroinflammation | Full Text

http://www.sciencedaily.com/releases/2015/12/151228161245.htm Disclaimer: "The study focuses on a subset of ALS cases -- an estimated 1 to 2 percent -- that are associated with variations in a protein known as SOD1. However, even in patients without mutations in their SOD1 gene, this protein...

There is a SOD1 gene blocking trial getting ready to enroll. You do not have to be SOD1 FALS to enroll. Apparently research has shown in the lab that lowering sod1 levels in SALS seems to be helpful! https://clinicaltrials.gov/ct2/show/NCT02623699?term=Amyotrophic&recr=Open&cntry1=NA%3AUS&rank=2

Today mom had her clinic visit. Her fvc numbers were really low. She tested at 55 two months ago, and before that she had maintained a constant 60 since October of 2014. Today she tested at 17. I was unprepared to hear such a low number since she doesn't outwardly show such marked decline. When...

Hi everyone. I first joined this group in 2010 a few months after the passing of my oldest sister from fALS. I have stopped in now and then to read but have not posted much, so I will just give you a brief update of how things have been. In February of 2014 both my younger brother and...