Happy New Year greetings once again to all loyal followers of the Fibrinogen Amyloidosis blog. Well, another year has passed without a blog post. I'm still asymptomatic, based on lab results from my annual physical exam and a visit to a nephrologist. No news is good news in that area.
I did attend the biennial ATTR/Hereditary amyloidosis meeting in Chicago the last weekend of October. It was another huge turnout of close to 500 patients and family members. The picture below was taken from a back corner of the main meeting room, which was very wide and not very deep, so only about two-thirds of the seating is visible.
This was the first of these meetings since 2019 because the one in 2021 was cancelled due to the COVID pandemic. I did not write a separate blog post about this meeting since there was not much to report regarding fibrinogen amyloidosis, but I did come away with a few observations:
2) I did ask the doctors in one of the breakout sessions if there were any drugs on the horizon for treating any of the non-ATTR hereditary types of amyloidosis, and they were not aware of any. So right now I honestly think our best hope for a drug treatment will be a drug that clears amyloid deposits of any kind from the body. One company working in that direction is Attralus, who did present at the Chicago meeting. Here are a couple of links to pages on the Attralus web site related to this activity, which they refer to as Pan-Amyloid Removal, or PAR:
https://attralus.com/science#pan-amyloid-removal
https://attralus.com/pipeline
Although Attralus is in the very early stages of of their development, I think there is reason to be optimistic if you look at the progression of ATTR treatments over the past 10 to 15 years. Right now I think Attralus is the one to watch.
Something else I did related to amyloidosis this year was attend the American Society of Hematology convention in San Diego in December. I did this as a volunteer for Amyloidosis Support Groups (ASG web site: https://www.amyloidosissupport.org/), which is a nonprofit patient advocacy group most of you are probably familiar with. I am officially a volunteer for that group now, and at this convention I helped set up and staff a booth the ASG had to help raise awareness about the ASG and the educational materials available to patients.
So that's a wrap on 2023. We'll see what 2024 has in store for us.
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