Alzheimer's Prevention Registry Webinar

[Julie G]

I think you're too early, Circ. Check the time above.

[circular]

That can't be, my mom said I was born three days late and I've been running like mad to be on time ever since

I've been going in circles for half and hour like a dumbsh*t. Wish they'd told me my time zone didn't match the webinar schedule but then my private virtual network would have foiled that anyway. I'm sitting here with my coffee and now it won't be left to sip it during the webinar. Guess I have to work now

[circular]

Looks like after I clicked the link and it took me to a web page to okay a launcher it actually opened a separate program on my computer but I didn't know it and it didn't tell me. So I was looking for the door in on the web page. When Julie called out my stupidity , I closed out all my failed attempts and was at my desk when I heard "The webinar will begin shortly. Please remain on the line." I then searched all over in my browsers for an open window where the webinar had opened up but there wasn't one. Worried my computer was possessed I began looking up a ghost chaser, but then I noticed the GoToMetting app in my dock.

Just recounting this in case it trips anyone else up.

[Julie G]

Glad you figured it out, Circ! I was laying out tile and missed the first few minutes. Did they announce how many were participating? I found the webinar to be very informative. I'd love to hear your thoughts.

[ru442]

They are seeking 1100+.... 60-75 years old and healthy with no symptoms. I also found it very informative.... was going to ask if they were using new or existing drug therapies but couldn't type fast enough!!

ETA: Here is the mutation he was speaking of that will prevent ALZ even in 4/4's (and rare for us Caucasians in the US):

APP A673T (Icelandic)
dbSNP ID: rs63750847

http://www.alzforum.org/mutation/app-a673t-icelandic

[slacker]

What did you learn, JulieGee? You know 100% more than I ever will, and I didn't find anything useful discussed. "Destined" to get Alzheimer's? Ouch! (OK, quote taken out of context, or maybe even fake news) Only thing of possible use was that alcohol was ok for ApoE4s, but I think that was an auditory hallucination! (Actually, I think he said that nobody knows...)

[ru442]

Only thing of possible use was that alcohol was ok for ApoE4s, but I think that was an auditory hallucination! (Actually, I think he said that nobody knows...)

What he said was for non 4's moderate drinking can be good, but the jury is out on 4's. Based on the new numbers and thinking to the future, my take is I've got a 50/50 shot at getting LODE when I reach my 70's if I were to do nothing, my odds increase with a healthy lifestyle and moderation. I'm not going to quit drinking, but I am going to be careful and not overdo it like I did before I found out I was 4/4.

[slacker]

.... was going to ask if they were using new or existing drug therapies but couldn't type fast enough!!

I think that they will use an amyloid targeting drug that has already failed a clinical trial (but not one that was "toxic"), or an unused compound with similar mechanism of action.

I remember Dr Bredesen's hypothesis that amyloid is initially created to protect the brain from the source of inflammation, and is not necessarily the cause of the damage, although it's possible that collateral damage occurs. I also remember there was one study drug that did a great job of removing amyloid, but cognition worsened. JulieGee, you've heard him speak more frequently and often than me; do my recollections sound accurate to you?

[Julie G]

Slacker, the two compounds (along with some heroic members) being trialed in the Generation Study can be found in this thread.

I'm not sure that I necessarily learned anything new, but I'm very grateful that the Banner Alzheimer's Institute put the webinar together for us in hopes of recruiting new participants. I think our community had fair questions that revealed a lot of insight.

I was pretty sure Dr. Tariot was referring to the Icelandic gene as being our "golden ticket," but appreciated that clarification. I found the risk comments to mirror similar discussions we've had on our site. Determining exact odds is impossible, but we have some pretty good ranges from multiple sources. Unfortunately, the alcohol comment was clearly directed to the general population, not us; but no one has studied alcohol intake in E4 carriers practicing otherwise healthy lifestyles. We are a unique group.

The amyloid hypothesis has taken some pretty big hits which doesn't seem to have dampened the enthusiasm of the Generation Study team. I'm guessing Christopher Columbus was equally certain when he began his journey. This is an important trial that will test the prevention vs. treatment arm of the amyloid hypothesis. It is relevant and necessary. I applaud and am deeply grateful to the scientists at Banner and all who will participate. That being said, I think Dr. Tariot took some big leaps from animal studies to human studies in terms of the efficacy of abeta prevention. I also thought the statin argument was a bit weak as statins have shown efficacy in preventing heart disease in humans, whereas anti-abeta agents have not.

Dr. Tanzi has recently demonstrated that abeta plays a protective role at least initially in AD pathology, but may ultimately become pathological. This is a hypothesis that Drs. Bredesen, Itzhaki, etc. have long espoused. I've heard Dr. Bredesen hypothesize that removing abeta once the underlying cause (biotoxin, virus, etc.) has been addressed may prove beneficial. Of course, no one knows for sure.