@sava
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Susan and
svarog are now friends 1 week, 3 days ago
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svarog's profile was updated 2 months, 1 week ago
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svarog replied to the topic Clinical trials in the forum Using our Forums 3 months ago
Hi Katie. Thanks for sharing the info. Great that you’re able to participate the trial. I hope that you’ll be able to experience a greater positive effect soon.
I was just wondering — given that Pridopidine works by binding and activating the sigma-1 receptor, do you perhaps know if this drug would also work for PALS with SIGMAR1 gene…[Read more]
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svarog replied to the topic Clinical trials in the forum Using our Forums 3 months ago
Indeed, I might’ve acted a bit naively there. Still young though 🙂 I’ve also joined Patients Like Me sometime ago, trying to find answers wherever I can. None of them really helped so far, but in the future, who knows.
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svarog replied to the topic Clinical trials in the forum Using our Forums 4 months, 2 weeks ago
Hi Lisa. I’ve just joined ‘stuffthatworks’ on your suggestion. I also think that it’s a good website that we could all benefit from it so I share your recommendation for everybody to join in.
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svarog replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 7 months, 1 week ago
I was just informed yesterday that Phase III Trial of AMX0035 is expected to start within a month in Europe (not certain, but expected).
I was asked by my doctor would I consider participating. However, I don’t know what would be the best decision –> if I choose to participate I can’t start with TUDCA now and there’s a chance of getting a…[Read more]
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Amanda and
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svarog replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis Information and General Questions 7 months, 4 weeks ago
It seems that Nuticost brand is not available in EU. I have access to Amazon.com (US site) and could buy it there but I’m afraid that it’s not allowed to get them imported into The Netherlands (EU). They may be withheld by customs..
I did find some alternative TUDCA brands though but none of them seems too legit (Brawn nutrition, Hepatica / DG…[Read more]
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svarog replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis Information and General Questions 7 months, 4 weeks ago
I would like to take Nutricost TUDCA and Theracurmin HP as in the trials, but having difficulties purchasing them in Europe. Does anyone know of any alternatives that are available in EU / Netherlands? Or ways to purchase and ship these from US in bulk? Where do you get your supplements from?
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svarog changed their profile picture 8 months ago
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svarog became a registered member 8 months, 2 weeks ago
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Hello Sava, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
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Hello Sava,
Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing a…[Read more]
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