@cmdgb6gmail-com
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svarog's profile was updated 9 months ago
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Susan Baker replied to the topic ALS Gene in the forum Diagnosis Information and General Questions 9 months ago
Great! Once you are logged into your Facebook account, click on this link. Please answer the questions that we pose to prospective members and you should be admitted soon. We have many members in the group that can answer any questions you have and offer support. For those with the C9 mutation, there are a few other FB groups that focus on that…[Read more]
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Susan Baker replied to the topic ALS Gene in the forum Diagnosis Information and General Questions 9 months, 1 week ago
I am so sorry to hear that. It depends in what gene they found(there are many!) and the penetrance of that mutation. We have a Familial ALS group on FB if you would like to join us there and learn more. My family has lost 5 to FTD FALS, so understand.
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svarog replied to the topic Clinical trials in the forum Using our Forums 9 months, 3 weeks 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 9 months, 3 weeks 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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Susan Baker changed their profile picture 10 months, 1 week ago
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svarog replied to the topic Clinical trials in the forum Using our Forums 11 months, 1 week 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 1 year, 1 month 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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svarog replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis Information and General Questions 1 year, 2 months 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 1 year, 2 months 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 1 year, 2 months ago
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svarog became a registered member 1 year, 3 months 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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Susan Baker became a registered member 3 years, 7 months ago
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Welcome to the ALS forum. I’m Amanda, one of the forum co-moderators. After you read through the topics, feel free to join in on the conversations, make posts and comment. If we can do anything to improve the ALS forum, just let us know!
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Hi Amanda! I was going to suggest a forum for fALS but see you have ALS and Genetics, so that is great! May I ask if you have ALS? I have been online for 10 +years, following my Mom’s death to FTD fALS in 2008. We have now lost at least 5 to fALS. I have started a couple of support groups on FB for ALS FTD CALS and anyone interested in FTD ALS and…[Read more]
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Hello Susan, and thank you for being active in the ALS forum. I haven’t been diagnosed. I volunteer for a fALS medical study out of the University of Miami and I go in at least every 12 months for testing. I have symptoms, but so far it is not thought to be ALS. The study also conducts blood work and a remote site visit every quarter. It is a…[Read more]
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Hello Susan, it’s good to “see” you here! I’m glad you were able to join this time. Be sure to let me know if you encounter issues again in the future. We hope you will take the time to go through all the open conversations that are in progress and feel free to join in. If you have any questions or concerns or even suggestions, just let us know,…[Read more]
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Dagmar, Thank you for welcoming me! I look forward to getting to know you better. I will tell you that I have so many groups that I work with and may not be here very often but please do message me if there is someone I can help or if there is something you want me to be aware of. Blessings!
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