@knscott
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Kevin Scott replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 4 months, 1 week ago
Did you look at https://www.healthwellfoundation.org/? There are income limits ($98,000 for two people in a household) but could be an option. Agree that given no cure, spending $$$$ on treatments that may have only marginal benefit is a challenge.
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Kevin Scott replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 4 months, 1 week ago
Started taking it 3 days ago. Yes, taste is not great but manageable. No side effects so far. 25 days to go and then move up to 2x day. In a clinical trial for Trehalose. Also no side effects but could be placebo.
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Kevin Scott replied to the topic Volunteering to participate in ALS research: what are your pros and cons? in the forum Research Topics 7 months, 2 weeks ago
I was diagnosed with ALS in July and just entered a clinical trail as part of the Healy Platform trial. I have no illusion that this trial will help me personally but if I can contribute to the research that will help those that come behind me then all good. It is a weekly infusion that takes about 2 hours so between going to the hospital and back…[Read more]
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Kevin Scott became a registered member 7 months, 2 weeks ago
Hello Kevin,
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]
Hi Kevin,
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]