Intro

[donbob]

Thanks for this site. Briefly, I am male, 70 and in good health in all ways. My maternal grandfather and 4 of his six children died from Altzheimers. My mother is 95 with cognitive impairment, but she seems different than my aunts and uncles. One aunt is 92 and sharp as a tack. My father(single child) and both of his parents had type 2 diabetes. I have signed up for three online databases for Altzheimers research. Sent a cheek swab to one of them, but the results won’t be made available to me. To find my genetic makeup, I presume 23andMe is the route. I wonder should I spend $200 for a report or $100. I am interested in the Apoe results. Any advice would be greatly appreciated.

[Gillyp]

A very warm welcome to our community donbob. Thank you for taking the time to post your story. Congratulations on being 70 and in good health. With your family history of Alzheimers I can see why you signed up for the three databases doing Alzheimers research. I'll personally be most interested to read your future posts about what you learn from these sites. I'm sure it will be of interest to the community here as well.

23andMe is certainly one test available to find out your genetic makeup. I'm sure others in the community will also jump in here and give you other suggestions. I think personally if you are going to do this test it's worth getting the additional information and so spending $199. While your current interest is in the APOE result you may find the other information is really helpful - such as your methylation status. You can use the information you gain to really help you make changes that may help your body thrive.

As you can probably already tell our site is full of lots of useful information. If you haven't already found our Primer (viewtopic.php?f=33&t=1418) you may want to start there. You can also search the Wiki for topics of particular interest, such as 23andMe testing. Once again donbob, welcome.

[NF52]

Thanks for this site. Briefly, I am male, 70 and in good health in all ways... I have signed up for three online databases for Alzheimers research. Sent a cheek swab to one of them, but the results won’t be made available to me. To find my genetic makeup, I presume 23andMe is the route. I wonder should I spend $200 for a report or $100. I am interested in the Apoe results. Any advice would be greatly appreciated.

Welcome, donbob!
Thank you so much for signing up for 3 Alzheimer's research sites!! Many Alzheimer's studies have in the past not met their enrollment targets because of a lack of participants who lived close enough to a study site, had a study partner, if required, met the age and health requirements, and had the time and ability to commit to the study.

As someone in the Generations Study, which recruits in part through Gene Match, I am guessing that might be one of the 3 programs for which you have signed up. You would have been sent a cheek swab to send back to them. My understanding from my own experience and what I have been told by the study location staff, is that people who are contacted to see about participating in a study are usually--but not entirely--people with ApoE 3/4 or 4/4. The reason is that those two groups are the focus of the Generations 1 and Generation 2 trials of two anti-amyloid therapies. A few people are called in who are ApoE 3/3, because part of the process is to determine what the effects are of disclosure of genetic risk in a carefully controlled and supported setting, in which information is provided about ApoE 4 and the study staff make a judgement if the potential participant is able to understand and emotionally deal with that information. (I think the parameters for "dealing with" are pretty broad, but would exclude, for example, someone who said they would be suicidal if they found out they had an increased risk for Alzheimer's.)

If you did sign up through Gene Match more than a few months ago, and have not heard from them, I think it's safe to conclude that you are probably ApoE 3/3, otherwise they would be eager to talk to you! If you haven't signed up with them, you can do so here: Gene Match You would be under no obligation, of course, to go into a site for the results, or to participate in a study if called.

If you are ApoE 3/3, it doesn't mean you have no risk of the dementia that your mother's relatives experienced, since the "average" person with ApoE 3/3 has about a 10-15% risk of either mild cognitive impairment (MCI) or dementia of Alzheimer's or other type by the age of 85. But it does mean that with good health and no subjective memory complaints at age 70, you are probably a long time away from having to worry about that, provided you keep up what I assume are great habits and strong cognitive reserve (a history of good education and problem-solving or other occupational challenges. Alzheimer's and other dementias, don't happen overnight and in the general population, it now appears that only about 1/3 of people over age 85 have MCI or AD, not the 50% that is sometimes in news stories.

And if you do decide to go with 23&me, I would agree with Gillyp that it's easiest to pay the $200. to get the health reports. Unlike many people who are stunned by their results, it sounds like you have made a reasoned decision to try to know your own health risks. You may confirm that you are ApoE 3/3, which means you would not have passed on an ApoE 4 gene to any children you have. You might even be able to tell them, as I could tell my two sons, that I didn't pass on a gene for hereditary early baldness from my father. For my sons, that was "priceless".

[CarrieS]

Thanks for this site.

Hello donbob. I'd also like to welcome you to the community. You may find it helpful to review How-To Get the most out of the ApoE4.info website guide in the Wiki. It's full of useful tips on how to search for previously discussed topics, subscribing to a topic, etc. It's really a work of art that can help us figure out how to navigate all of the important information available here.

I too look forward to hearing more about the studies that you've enrolled in. I'd like to repeat what NF52 said "thank you"!

[johndoealzh]

Hi. I am a participant in the Generation 2 Study. I thank you all for working together on this site.

[NF52]

Hi. I am a participant in the Generation 2 Study. I thank you all for working together on this site.

Welcome, johndoealz!
Congratulations on being part of what I like to think is an adventurous bunch of Generations Study participants! (If you call people who don't cringe at having MRI machines clanging for 30 minutes "adventurous", don't mind needles and enjoy taking brain teaser tests "adventurous". I hope this forum will be a source of adventure, information and support. You can find an easy guide on avoiding the pitfalls most of us fell into on the wiki's How-To" Get the most out of the ApoE4.info website, and if you're looking for a terrific guide to all things ApoE 4, I recommend the Primer by Stavia, a practicing physician and 4/4 member.
Feel free to jump into any conversation, and to post more about yourself and ask questions--we love to hear from new members!

[Chameleon]

Welcome to the APOE4 community johndoealzh!

By all of us working together and participating in studies like you have, we can help move the "science" forward faster. That is one thing the Internet has really helped with.

If you haven't already done so - reading the Primer on this site can be very helpful as well as the wiki.

Many members also tell their story in the Our Stories forum so please feel free to share more of your background with us.

Thank you for participating in the Generation 2 study!

[Chameleon]

I just wanted to convey two comments on the 23&Me test. One is that you don't have to spend the $200. With the cheaper test you should still be able to get the raw data file and that is where the "magic" is. The raw data file is what you really want. Then you can take the file and run it through another program like Promethease or Genetic Genie.

The second is that if you have privacy concerns you may want to steer clear of 23&me. "Drug giant GlaxoSmithKline is investing US$300 million in the DNA-testing company 23andMe in a deal they say could spark the creation of important new medicines, but one that is also raising privacy concerns." There are companies like Maximized Genetics that do not store your information.

[johndoealzh]

Thank you all for the welcome. I like adventures.

[donbob]

A very warm welcome to our community donbob....

Thank you. I am getting my mind around the scope of the topic. Plenty of learning needed on my part.