@katieliz
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Katie Liz replied to the topic Clinical trials in the forum Using our Forums 6 months ago
I was diagnosed in January 2021, and officially first had symptoms in May of 2020. So most trials would exclude me after two years from onset. I get my ALS care at Stanford in Palo Alto, CA. Right after diagnosis I was immediately enrolled in a trial for Rabuluzumab, but after about six months they stopped the trial because preliminary data sh…[Read more]
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Katie Liz replied to the topic What are your opinions and thoughts on volunteering for ALS clinical trials in the forum Research Topics 1 year, 2 months ago
I signed up for a phase 3 trial of a drug called Rabuluzumab. I did it because I’m early in the disease process and I hope if I am getting the drug (and not the placebo) it helps slow the progression. I don’t want to just do nothing so I’ll take any opportunity I can get.
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Katie Liz became a registered member 1 year, 4 months ago
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Hello Katie,
Welcome to the forum! I am one of the forum moderators, as well as a person who is 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…[Read more]
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Hello Katie, 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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Katie, thank you for participating!! It is because of people like you that researchers will find what will work.