@amanda-sifford
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Amanda posted a new activity comment 3 days, 4 hours ago
Hi Teresa,
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 3 days, 5 hours ago
@Dagmar
This reminds me of a friend of mine from my Church in New Orleans. My pastor’s son (also a pastor) was diagnosed with ALS several years ago. Brian chose to not “fight” ALS. He calls life a wonderful cluster [email protected]#$. And how right he is. It was his post on Facebook that made me realize that there is more than one way to approach an ALS…[Read more] -
Amanda posted a new activity comment 4 days, 4 hours ago
Hello Charles,
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 5 days, 2 hours ago
Hello S,
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 5 days, 2 hours ago
Hello Julianne,
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 e…[Read more]
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Amanda posted a new activity comment 5 days, 2 hours ago
Joseph,
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 5 days, 2 hours ago
Hello Howard,
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 5 days, 2 hours ago
Hello William,
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 Have you applied for Expanded Access for an experimental treatment? in the forum Living With ALS 1 week, 1 day ago
“Expanded access (or “compassionate use”) gives people access to investigational drugs under certain conditions outside of a clinical trial. The FDA always prefers that people participate in a clinical trial first to ensure they truly have no other options.”
There are a number of treatments in the pipeline, and some look promising. Therapi…[Read more]
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Amanda posted a new activity comment 1 week, 1 day ago
Hi Greg,
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, 1 day ago
Hi Greg,
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, 1 day ago
Hello James,
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, 1 day ago
Hello Ann,
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, 1 day ago
Hi Ellen,
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 replied to the topic Loose bowel movements in the forum Living With ALS 1 week, 1 day ago
@Katie
I absolutely agree!! I think as we learn more and more about the different causes and triggers of ALS “we” will know how to classify and treat cases. We already know that each genetically linked case can not be treated the same way. The Tofersen treatment for the SOD1 mutation will not fix what is wrong in other mutations that lead to ALS.…[Read more]
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Amanda replied to the topic Loose bowel movements in the forum Living With ALS 1 week, 2 days ago
This is interesting. For years I’ve been seeing doctors because of digestive issues and pains in my abdomen and 2 colonoscopies, x-rays, cat scans, fod map diets, food allergies, gluten and all kinds of things over the years has ruled out crohn’s, diverticulitis, colitis and everything else. This is all over a decade! I had an episode of the c…[Read more]
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Amanda posted a new activity comment 1 week, 5 days ago
Hello Larenda,
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 e…[Read more]
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Amanda started the topic Fear and ALS in the forum Living With ALS 2 weeks, 1 day ago
Juliet captured what I have been thinking about in her column, How Fear Can Show Us What’s Important.
Since my diagnosis in December, I’ve been swaying between a variety of emotions. I’m certain everyone in our community understands.
The two emotions that I have been experiencing the most are fear and guilt. Survivor’s Guilt is the best de…[Read more]
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Amanda posted a new activity comment 2 weeks, 3 days ago
Hello Cara,
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, 3 days ago
Hello Steven,
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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Hello Amanda,
Thank you for letting me join the forum.
Joseph Osowski