@amanda-sifford
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Amanda posted a new activity comment 2 days, 21 hours ago
@Alan,
This is definitely a safe space and your honesty and frankness is appreciated. You are likely capturing so many other pALS same feelings. If you ever need to vent or unload and don’t want it “public” on the forums, you are welcomed to PM me. Sometimes it’s easier to vent to someone who you feel safe with, but who is not personally close…[Read more] -
Amanda replied to the topic Organ donation and ALS in the forum Diagnosis Information and General Questions 2 days, 22 hours ago
@Alan,
That’s what I’ve been telling the research team at Miami, “You can have my brain and body as soon as I’m done with them.” Great minds 🙂Amanda
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Amanda replied to the topic Does fungus cause ALS! in the forum Diagnosis Information and General Questions 6 days, 21 hours ago
I completely understand looking for a cure, or even a miracle. I really do! I’m the 15th person in my family to have ALS, and I’ve watch many family members succumb to the beast. Perhaps because ALS has been in my family, and life for decades, I’ve researched the daylights out of miracle cures and alternatives to the traditional treatments or…[Read more]
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Amanda posted a new activity comment 6 days, 21 hours ago
Hi Alexi,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!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 h…[Read more]
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Amanda posted a new activity comment 6 days, 21 hours ago
Hello Daniel,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!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 h…[Read more]
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Amanda posted a new activity comment 6 days, 21 hours ago
Hello Dennis,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!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 h…[Read more]
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Amanda posted a new activity comment 1 week ago
Hello Ray,
Please keep in mind that I do not work in the medical field, so my answers are based on my internet research and asking my medical team questions.From what I understand all three work in different ways. Riluzole reduces the production of glutamates that are harmful to nerves. Thus, reduces nerve damage. I think this was the first…[Read more]
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Amanda posted a new activity comment 1 week ago
Hi Ray,
When I was diagnosed my team applied for early access to Toffersen, now QALSody, When I asked if anyone had been in the clinical trials and what they thought and how they felt, I had a participant send me a private message. Everyone in that trial had to sign an agreement not to discuss the trial or treatment with others, and it…[Read more] -
Amanda replied to the topic Does fungus cause ALS! in the forum Diagnosis Information and General Questions 1 week, 1 day ago
This article appears to be more of a literature review with various hypothesis. Most of these have been researched and continue to be investigated from what I’ve read in other articles. It is important to look at peer reviewed medical/scientific journal articles when researching and make sure the article is not someone’s ideas. Also, until they…[Read more]
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Amanda posted a new activity comment 1 week, 2 days ago
Hi Jo,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!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 o…[Read more]
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Amanda posted a new activity comment 1 week, 2 days ago
Hello Rich,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!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 h…[Read more]
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Amanda started the topic Coping with ALS in the forum Living With ALS 1 week, 2 days ago
Here is an article just published about coping with an ALS diagnosis.
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Amanda started the topic ALS TRIVIA – – "The Les Turner Foundation" – – Did you know? in the forum ALS Awareness Month 1 week, 4 days ago
The Les Turner Foundation was established in 1977 after Les was diagnosed at age 36 with ALS. At that time there was very little research about ALS. The Les Turner Foundation set out to raise funds to provide vital research and resources to people living with ALS and their families. The Les Turner Foundation is known for supporting pALS in the…[Read more]
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Amanda posted a new activity comment 2 weeks, 1 day ago
Hi Steve,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!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 h…[Read more]
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Amanda posted a new activity comment 2 weeks, 1 day ago
Hi Sharon,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!! I’m so sorry to hear that your sister has ALS.We are happy you have joined our online community. You will find that the ALS forum is made up of people with different ass…[Read more]
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Amanda posted a new activity comment 2 weeks, 1 day ago
Hello Richard,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!! I’m so sorry to hear that you have ALS.We are happy you have joined our online community. You will find that the ALS forum is made up of people with different ass…[Read more]
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Amanda posted a new activity comment 2 weeks, 1 day ago
Hello Ed,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!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 h…[Read more]
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Amanda posted a new activity comment 2 weeks, 1 day ago
Hi Karen,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!! I’m so sorry to hear that you have ALS.We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations wit…[Read more]
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Amanda posted a new activity comment 2 weeks, 1 day ago
Hello Andrew,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!! I’m so sorry to hear that you have ALS.We are happy you have joined our online community. You will find that the ALS forum is made up of people with different ass…[Read more]
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Hi Amanda, sorry for my late response .Thank you for your Welcome. I have enjoyed reading the informative information. Sometimes I feel I am more in touch than my Professor > I now look forward to contributing
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Amanda posted a new activity comment 2 weeks, 1 day ago
Christina,
I have a mutation associated with a slow progression. If you want to talk just PM me! I’m the 15th person in my family with ALS so, unfortunately I’ve seen more than I would like. - Load More
Amanda,
Thank you for your kind welcome. I am very new to this terrible disease having been diagnosed only about 1 month ago. I greatly appreciate your message as I begin navigating this journey and am still very afraid. I will peruse the forum and join in as appropriate. Again, thank you for your message. It makes me feel connected.