Vance replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 5 months ago
I started taking Relyvrio (AMX0035) as a participant in the clinical trial since March 2018. I have not experienced any of the side effects that are listed for the drug. Yes it has an extremely strong taste. I have found that letting it sit in lukewarm water for around 30 minutes gets it to dissolve more thoroughly. I usually take it prior to…[Read more]
Vance's profile was updated 8 months ago
Vance replied to the topic What's the latest news on AMX0035? in the forum Research Topics 1 year ago
I have been a participant in the clinical trail of AMX 0035 since 2018. Below is the public testimony I gave to the FDA at the hearing. My response to AMX0035 may not be typical, however I believe there were other case similar to mine.
I was diagnosed with ALS in December 2017. I have been a participant in the Centar Clinical Trial sinc…[Read more]
Vance posted an update 2 years, 7 months ago
I have been in the Centaur trial of AMX0035 since March of 2018 and my life has improved dramatically since I began. My results have, I think, been at the top of the scale for those on the trial.
I had noticed muscular problems in August of 2017 and in December of that year I received my diagnosis at the Mayo Clinic in Rochester. At that time,…[Read more]
That is certainly great news Vance.
Our members may be interested in learning more at this webinar:
“Long-Term Survival of Participants in the CENTAUR Trial”
Sabrina Paganoni, MD, PhD and Merit Cudkowicz, MD, MSc from the Sean M. Healey & AMG Center for ALS at Mass General Hospital
Wednesday, October 21, 2020
2:00 – 3:00 PM EDT
Please join…[Read more]
Vance became a registered member 2 years, 7 months ago
Welcome to the forum! I am one of the forum moderators, as well as a person who is also 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]
Hello Vance, 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]
Vance, that sounds very promising!