We’re a group of ordinary men and women, from all over the world, who’ve banded together in an effort to collect information to save our very lives and the lives of those we care about. After participating in 23andMe, a personal genomics service, we learned that we carry the APOE-ε4 allele, putting us at high risk for Alzheimer’s as well as other forms of dementia, and even heart disease and other maladies.
As if that wasn’t frightening enough, imagine our distress upon learning that the medical community has arrived at NO consensus on prevention strategies for people with our genetic predisposition. The current advice from experts for E4 carriers is wildly contradictory. We soon learned that we are genetic pioneers, modern day canaries in the coal mine, searching for and testing out strategies. 23andMe provided forums for us to talk with one another, and thus began page after page of contributions from all corners of the globe. We avidly began sharing and examining research, speaking to experts, comparing advice and strategies, challenging long-held notions, conducting n=1 experiments, tracking and sharing biomarkers, and more- all in an effort to find a prevention strategy for E4 carriers. After spending over a year amassing hundreds of pages of information, we realized we were sitting upon a treasure trove that had never been collected in one place. In an effort to catalogue and organize our work, https://www.apoe4.info was born.
We’ve taken our collaborative endeavor one step further by creating a 501(c)(3) tax-exempt public charity, ApoE4.Info, Inc. We now have the infrastructure in place to push for more answers, research, and treatment strategies for our population.
ApoE4.info, Inc. is dedicated to understanding the APOE-ε4 gene and how it impacts 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