ApoE4.Info

We only have to register and be logged in to post. As guests, who can be non-members or members who are not logged in, we have always been able to read. While this reality is easy to forget as we become comfortable in the cozy community here, it is evident to first-time visitors - upon every initial visit to the forums, the list of forums appears and can be explored in full.

So while the forums have never been private in the "by invitation only" sense or even limited to perusal by members only, in July we did correct a technical issue that was preventing search engines from seeing forum content. As a non-profit with the mission described here ...

Our Mission. ApoE4.info, Inc. is dedicated to understanding the APOE-ε4 gene and how it affects health. We do this by:

• providing basic information about the APOE-ε4 gene
• running an active forum and Facebook page
• acting as a contact point for anyone interested in the APOE-ε4 gene
• pursuing research about the APOE-ε4 allele to mitigate related negative health effects including but not limited to Alzheimer’s disease and cardiovascular disease
• connecting researchers and carriers of the gene
• organizing regular APOE-ε4 Conferences
• working with the media to inform and educate health professionals and the public about the APOE-ε4 gene

... ApoE4.Info, Inc. should be easy to find. Our forum discussions are a rich source for search matching and greatly improve our ability to serve as "a contact point for anyone interested in the APOE-ε4 gene".

All that said, Internet searching is effective, and our profile today is higher than it was. The moderators have had to adapt to a higher spam burden, and it's as natural for us all to be surprised to see our words pop up on search engine results as it was for us to be amazed by Julie's appearance on Dr. Oz and the mention of our community in Dr. Bredesen's The End of Alzheimer's. We're on a journey together to build a world that takes our genetic profile into account, and our prominence will continue to grow.

Lindy wrote:When I signed up for the list I thought it would be private (having had to register). I was pretty surprised to learn that everything we post here goes straight out to the Internet. Maybe that little detail should be emphasized at the beginning.

Ohmigosh! What exactly do you mean? I haven't discussed my situation with my family yet -- I was trying to get my head around it first and hope to be calm when I told them. So someone in our group sends our notes out to what, Facebook and others? Maybe I'll drop out.

AliBlue2 wrote:

Lindy wrote:When I signed up for the list I thought it would be private (having had to register). I was pretty surprised to learn that everything we post here goes straight out to the Internet. Maybe that little detail should be emphasized at the beginning.

Ohmigosh! What exactly do you mean? I haven't discussed my situation with my family yet -- I was trying to get my head around it first and hope to be calm when I told them. So someone in our group sends our notes out to what, Facebook and others? Maybe I'll drop out.

AliBlue2, if you read Marc’s post above, you’ll see that he’s referring to content on the forum being able to appear in search engine results. There’s no push out to Facebook or other social media of forum content.

If you’re still concerned, you could change your username to something completely unrecognizable to family and friends. Most of us do that anyway,

AliBlue2 wrote:
Ohmigosh! What exactly do you mean? I haven't discussed my situation with my family yet -- I was trying to get my head around it first and hope to be calm when I told them. So someone in our group sends our notes out to what, Facebook and others? Maybe I'll drop out.

Ali; you can change your userid by sending an email to our tech team; tech-team@apoe4.info. Let them know what you want your new userid to be. I guess we should all assume that nothing is private online now.