Tuesday, January 2, 2024

Happy New Year!!!!!!!!!! !!

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:

1) The treatment options for ATTR amyloidosis, and the prognosis for those patients, have significantly improved since the first time I attended one of these meetings which was in 2011. I remember in 2011 one of the main topics of discussion at that meeting was organ transplants, and there were many patients there with double or triple organ transplants. And I believe only two or three drug treatments for ATTR undergoing clinical trials were discussed at that meeting. Compare that to the 2023 meeting, where organ transplantation was not even on the agenda yet there were presentations by six or seven different pharmaceutical companies regarding drugs they have under development or in clinical trials.

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:


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.

This is a huge convention which usually has over 25,000 medical professionals in attendance from around the world. We had a good turnout at our booth and passed out a lot of the awareness booklets the ASG put together, and I know we had people from at least 12 countries visit and express some sort of interest.

So that's a wrap on 2023. We'll see what 2024 has in store for us.