A good friend of ours is the head of patient communications for one of the companies working to develop a therapy for NAFLD/NASH. They have had good results in clinical trials so far and we are hopeful that they succeed.
One of their goals is to help educate people about this disease. I know the founders of the company and unlike some drug developers these are genuinely patient oriented people so we support their efforts when we can.
One of their goals is to help educate people about this disease. They are going to build a new package of patient education material and don't want to use the typical stock stories and images. They want to tell real patient stories and communicate about the journey we actually face every day. I'm encouraged that they want to try to do better and said I'd ask if anyone in our community would be interested in talking with them. There are no commitments here but if you would like to learn more, message me and I'll arrange to introduce you to them.
Wayne
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nash2
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I’m not sure. I’ve been a guinea-pig many times, that I’ve started putting my foot down & taking a stance. My NAFLD originated via acetaminophen based drugs when I was in the military back in 76ers, but I wasn’t diagnosed with it until11 years after the fact. Now I’ve got t2d & there is no way I’m taking man’s medicine…mine comes strictly from Nature’s & food. If I loose this doctor I presently have, oh well.
I know what you mean. These folks aren't developing drugs, they are building tools to help people understand and manage their disease so if that is of interest consider giving them your perspective.
I am always up to learning more. Currently I lowered to Nash 3 and have qualified for a trial in Columbus for an injection drug. However, my biopsies last February were pretty horrifying for me, so have not committed. I have to have the biopsy for the trial and then again at the end. This is keeping me from entering. Not sure I can go through that twice and then find out in a year that I didn't even get the drug.
The biopsy requirement by FDA is something we are advocating that they change but it is a slow process. We are starting to see a few trials that aren't using them. You might discuss other potential trials with your doc. Many of these folks are doing multiple trials or may know of a colleague doing something else. I've had 3 biopsies and I felt that what I learned was worth it but it is a challenge.
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