fda

Is Radicava turning out to be one of the biggest FDA Boondoggles ever? I am being hammered with phone calls and emails to sign up for this drug. My doctor believes there is not enough information yet. It seems strange to me the approval and distribution of this drug is based on an Asian study of...

in a 750000 citizens capital of my country, i found just one guy (early twenties) who has ALS. he was in china, hardly speaking and moving etc so i dont have base to compare with him. there are at least more than 15 people having ALS in my town, but for sure they dont use internet. as i said...

Please join us for something new Feb 13-14, 2018! https://www.morethanourstories.org Last February three of us did our own mini ALS advocacy day. We had some issues that were very important to us and wanted to get in front of the government appropriations process (which is already iced by the...

RCH4 revisited again I have been on the ALS drug RCH4 for the past 19 months and I am upset about the moderators comments which are most unfair to a charity who has provided both support and RCH4 free of charge worldwide for years. The moderator here, Laurie, has locked two previous threads...

Have recently read two interesting research papers on Human Endogenous Retrovirus-K and TDP-43 and it's connection with HIV Neuropathology. It looks like drugs for different kinds of HIV Neuropathology are approved by FDA and can be used for ALS. Please, correct me if i'm wrong. Would appreciate...

I don't know how many of you are familiar with the ENFit connector for tube feeding, (and the behind the scenes maneuvering by GEDSA). I cannot even imagine what some of you must go through trying to screw the darned parts of the ENFIT connectors together. I've never used ENFit, and have a...

https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm557102.htm Great news! Not a cure or a miracle but very welcome!

I finished the Tirasemtiv Clinical Trial. Two weeks open label, to test reactions. 48 weeks double-blind trial. An extra two weeks due to scheduling. My breathing numbers have not dropped for the past 24 weeks, and my leg and arm strength improved over the past 18 weeks (slightly). My small...

Hi All, I know that the FDA will be deciding what to do about Endaravone in June 2017 here in the US, but I'm wondering, do any of you know how I could research where we could potentially go in Japan to have access to Endaravone sooner than that? I imagine that even if the FDA approves, the...

Important action item! There are indications that MT Pharma America (Mitsubishi Tanabe) may well be willing to set up an early access program for edaravone for people with ALS. It's very important that they hear from people to let them know that this would be used and appreciated. Here is...