SOD1 mutation: Did you know?
Did you know that 5% to 10% of ALS is associated with a genetic mutation. Did you know that the SOD1 mutation was the first…
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Research on treatment of ALS associated with the SOD1 gene mutation
https://www.sciencedaily.com/releases/2019/05/190501161224.htm I came across this article on Science Daily website. It discusses a possible treatment for people with fALS due to a mutated SOD1 gene.…
#AskMeAboutALS
A press release from ALS Therapy Development Institute in Cambridge explains that even with successful public awareness campaigns such as the Ice Bucket Challenge many…
Research is impacting treatment
This study of out Penn State https://alsnewstoday.com/2019/04/26/prognosis-model-predicts-risk-respiratory-insufficiency-death/ may help doctors predict and treat pALS who are likely to start experiencing respiratory difficulties. By using this new…
Are doctors treating or suggesting clinical trials based on genetic mutations associated with ALS?
https://alsnewstoday.com/ionis-sod1-rx-biib067/ Qalsody (tofersen) for ALS For pALS with familial ALS, are your doctors discussing medication, clinical trials or other treatments with you that are specifically…
2019 National ALS Advocacy Conference June 9 – 11, 2019 – Washington, D.C.
The National ALS Advocacy Conference is right after ALS awareness month. ALS advocates will be in Washington D.C. fighting for better research and support for…
Wheelchair
https://www.youralsguide.com/power-wheelchairs.html https://www.youralsguide.com/power-wheelchairs.html Does anyone have resources they can share that will help ease the expense for devices and equipment? I know the ALS Association has…
Advances in research
https://alsnewstoday.com/2019/04/05/human-bone-marrow-cells-hold-promise-als-therapy-mouse-study/ Transplanted Human Bone Marrow Cells Hold Promise as ALS Therapy, Mouse Study Shows
Dogs and ALS
I was going through some articles from 2017. I found this one to be interesting. Have you heard about this research? I’ll be looking to…
No White Flags
I moved to New Orleans to be closer to my father when he had ALS. Around the same time Steve Gleason was diagnosed with ALS.…