Young E4/E4 - are there any research studies I can participate in?

[aiwebb]

I'm a 31 year old white male in the US, and according to genetic testing I'm E4/E4. I believe the current estimates put me at about a 14x increased risk of late onset Alzheimer's.

I've seen a lot of information about what I can do for myself to improve my odds, and that's great, but what I haven't really been able to find is how I can best make myself available to researchers.

I know that having E4/E4s in research studies is valuable, and that researchers often have to use very large sample sizes just to get enough of us at random to produce statistically significant results - and unfortunately, many labs around the country just don't have the funding to do studies that large.

It seems like it'd be helpful for us to come to them, but I don't really know how. The only resource I found for people who know their genetic status to get in touch with researchers who need them is GeneMatch, but that's only open to people 55-75.

Does anyone have any ideas or recommendations? I'd love to join some sort of longitudinal study that looks at E4/E4s over the years, focusing on healthy younger adults who are in the highest risk categories.

[Markus]

I'm also 4/4 and in my early thirties (32) being interested in participating in research.

[Julie G]

You may want to consider signing up for the Alzheimer's Prevention Registry. You'll get emails about study opportunities and other research news. There's no commitment; just a way to stay informed about possible matches.

[NF52]

I'm a 31 year old white male in the US, and according to genetic testing I'm E4/E4. I believe the current estimates put me at about a 14x increased risk of late onset Alzheimer's....Does anyone have any ideas or recommendations? I'd love to join some sort of longitudinal study that looks at E4/E4s over the years, focusing on healthy younger adults who are in the highest risk categories.

Welcome to another 4/4!

As someone who is in a clinical trial myself, I'm glad that you are looking to join a longitudinal study. The one below isn't specifically for 4/4s, but it is a massive new investment to find one million people and follow them for at least a decade (and likely far longer) through online research and collections of genomic info, blood, urine and other samples, as well as access to electronic health records. This study is being conducted by the U.S. National Institute of Health (NIH) and has explanations for how data will be kept secure. Here's the main website: All of Us Research Program, and here's a link to their summary of the program protocol, with information about what will be asked of participants. https://allofus.nih.gov/sites/default/f ... ummary.pdf

And as for that estimate that you are at 14x the risk of Late-Onset Alzheimer's Disease (sometimes abbreviated as LOAD), that seems a little high, and always depends on what "average" risk it's being compared to: the average risk of someone age 31 with ApoE 3/3? (No one can reliably predict that.) The average risk of people ages 60-75 who are currently closer to the typical diagnostic age? The average risk of people your grandparents' age, many of whom may have been diagnosed with LOAD when in fact they had other diseases? One 2017 meta-analysis of four large cohorts of people in the US and Rotterdam, suggests that as a 66 year old woman with 4/4 and family history, I might be at the higher end of a 30-55% risk of either Mild Cognitive Impairment (MCI) or Alzheimer's disease by the time I am 85. Of course, I hope to beat those odds, especially with participation in a clinical trial, and with currently low Hba1C, no coronary artery plaques, normal MRI and low glucose. But I also choose to live my life knowing that we cannot completely control the outcome of our journey, but can seek to make it a worthwhile one for ourselves and others.

If you join "All of Us", please share your experience with our forum! And feel free to share your experience of learning this information, and how you decide to use it as part of living a full life.

[Chameleon]

Hi aiwebb,

I had originally welcomed you back on Thursday, but there was some difficulty with the site and my post got wiped out.

I commend you for finding out early what you APOE4 status is and now wanting to looking for research opportunities. Please let us know if you participate in any.

Welcome to the community!

[NF52]

I'm also 4/4 and in my early thirties (32) being interested in participating in research.

Hi Markus, I wanted to be sure you had a chance to see this reply about the All of Us research project.

As someone who is in a clinical trial myself, I'm glad that you are looking to join a longitudinal study. The one below isn't specifically for 4/4s, but it is a massive new investment to find one million people and follow them for at least a decade (and likely far longer) through online research and collections of genomic info, blood, urine and other samples, as well as access to electronic health records. This study is being conducted by the U.S. National Institute of Health (NIH) and has explanations for how data will be kept secure. Here's the main website: All of Us Research Program, and here's a link to their summary of the program protocol, with information about what will be asked of participants. https://allofus.nih.gov/sites/default/f ... ummary.pdf


If you join "All of Us", please share your experience with our forum! And feel free to share your experience of learning this information, and how you decide to use it as part of living a full life.

[Markus]

I'm also 4/4 and in my early thirties (32) being interested in participating in research.

Hi Markus, I wanted to be sure you had a chance to see this reply about the All of Us research project.

As someone who is in a clinical trial myself, I'm glad that you are looking to join a longitudinal study. The one below isn't specifically for 4/4s, but it is a massive new investment to find one million people and follow them for at least a decade (and likely far longer) through online research and collections of genomic info, blood, urine and other samples, as well as access to electronic health records. This study is being conducted by the U.S. National Institute of Health (NIH) and has explanations for how data will be kept secure. Here's the main website: All of Us Research Program, and here's a link to their summary of the program protocol, with information about what will be asked of participants. https://allofus.nih.gov/sites/default/f ... ummary.pdf


If you join "All of Us", please share your experience with our forum! And feel free to share your experience of learning this information, and how you decide to use it as part of living a full life.

Thank you, I will look into it!

However, since I'm from Sweden, I'm not sure that I will be able to participate.

[Aes0522]

Hello, I just found out I’m a 4/4. I’m so scared and devastated. I’m a 37 yo white female. I keep finding conflicting percentages what my risks are. Can anyone give some encouraging news of any kind or am I doomed bc I’m a woman with 4/4 and a family history of AD. I have a 1 Year old little girl and don’t want give up any precious liyears without her or burden her.

[NF52]

Hello, I just found out I’m a 4/4. I’m so scared and devastated. I’m a 37 yo white female. I keep finding conflicting percentages what my risks are. Can anyone give some encouraging news of any kind or am I doomed bc I’m a woman with 4/4 and a family history of AD. I have a 1 Year old little girl and don’t want give up any precious liyears without her or burden her.

Dear Aes0522, please let me volunteer as your virtual 4/4 mom today to give you a big (virtual) hug, and tell you how sorry I am that you have to deal with this at your age. Your feelings are perfectly normal; I felt like I had been punched in the gut and couldn't think of much else when I learned I was 4/4 at the age of 62.

It is absolutely normal to feel scared and devastated with unexpected news of a medical issue, especially when it comes with no clear answers. In fact, there's a name for it: Acute Medical Stress Disorder. It happens to parents whose infants are born prematurely, or with congenital anomalies. It happens to the families of young adults who have brain injuries in car accidents, when doctors are unable to tell them exactly when they will recover and go back to college. And it happens when you hear that you have something that is a known genetic risk factor for late-onset Alzheimer's disease. And it gets better--as long as you have support for the feelings being normal, encouragement to ask questions and seek information, and ways in which you can take some control over some factors in your life that make sense to you to reduce your risks.

Here are some important facts:
1) You are NOT at risk of Early-Onset Alzheimer's Disease (EOAD) before the age of 65. Most people who get Alzheimer's early have a rare and dominant mutation for that, with sadly lots of examples in their families of people getting dementia in their 40's and 50's. That's a completely different--and rare--gene.
2) Having a gene that is "associated" with risk for a condition or disease, does not mean you will get the disease. If I say that I had maybe 5x the risk of vaginal cancer because of an estrogen-based drug my mother took to prevent a miscarriage (true), it still only means I had about 1 in 1000 risk of that cancer, because it is so rare. (And didn't get it.)
3) Having a gene that increases your risk of some coronary artery disease, or high blood pressure, which ApoE 4 seems to do in some people, doesn't mean you WILL get coronary artery disease--especially if you don't smoke, don't drink to excess and don't have uncontrolled diabetes. We all have OTHER genes that interact with ApoE 4/4--sometimes to reduce our risk. We have ApoE 4/4 members in their 80's who are doing just fine. I confess to being obese for decades until I retired, and yet my "cardiac age" is 39, with no signs of coronary artery disease. Maybe in addition to ApoE 4/4, I inherited genes from a grandmother who lived to be 93? Think about your family tree--and tell us about it, if you want to, in Our Stories. I'm guessing you have some healthy ancestors also.

You are not doomed! At the age of 66 and never having had a P.E. class until 9th grade (!!) I have three grown children and two grandchildren, had a challenging career, went back to grad school in my late 50's, and now participate in a clinical trial for healthy, cognitively normal people who are ApoE 4/4 in their 60's and 70's. There are people like me around the world, participating in that and similar trials, or following lifestyle interventions like ketogenic or paleo diets, the Bredesen protocol and others.

A 2017 meta-analysis of 4 large studies, with several thousand people in the U.S. and Netherlands who were followed for decades, predicted that people with ApoE 4/4 between 60-75 years old have a 30-55% chance of either Mild Cognitive Impairment (which wouldn't keep me from living at home) or dementia by the age of 85! [I can give you articles to read if you'd like them.] Even my generation can still benefit from avoidance and control of risk factors like diabetes, smoking, high blood pressure and limited access to education, exercise and cognitive and social stimulation, and from possible drugs to prevent brain changes that lead to dementia.

You have time for the science around prevention and treatment to make huge leaps. The U.S. government alone (not counting drug companies) is spending almost $2 billion next year on research into Alzheimers and related dementias.

When you read "conflicting stories" about the your risks, remember: some mass media stories are simply re-cycling old statistics they read somewhere. If you want accurate information, read some of Stavia's PRIMER. She's runs a busy family medicine practice, has a healthy adult son who is also a doctor, travels around the world, recovered from two serious brain injuries--and happens to be ApoE 4/4 and in her late 50's.

You are going to live long enough to see your daughter become a wonderful woman, as I have done with my daughter, and am now seeing her 5 year old and 3 year old enrolled in school. I fully expect to see them enroll in college. My children have seen both their grandmothers deal with changes in cognition in their 80's, and both eventually died of heart and respiratory failure. But they never lost their wonderful spirit and smiles, and they were never a "burden" to any of us. You NEVER will be either.

Please reach out to us to let us know how we can help you through this rough patch, and reach out also to trusted friends and family, if possible. If you find yourself struggling to get through the days, please consider some brief therapy with someone who can help you process this. It does get better--it really does. For now, allow yourself permission to feel a whole range of feelings about this news.

[Magda]

Hello, I just found out I’m a 4/4. I’m so scared and devastated. I’m a 37 yo white female. I keep finding conflicting percentages what my risks are. Can anyone give some encouraging news of any kind or am I doomed bc I’m a woman with 4/4 and a family history of AD. I have a 1 Year old little girl and don’t want give up any precious liyears without her or burden her.

Welcome to the community Aes0522!
I am sending warm cyber hugs your way!

I think its completely normal to feel scared and terrified! You are not alone and just because you have genetic predisposition does not mean that you will develop Alzheimer's disease.
As you probably already know the genes are not your destiny. You will see this statement being proofed and confirmed many times on our forum!
You will notice that many members have adjusted their diet and life style to minimize the risk and even more, some have successfully reversed cognitive decline!
The science and the research are on your site! You are very young and there are really many uncomplicated adjustments you can implement to your life right away to reduce the chances of developing dementia.
I invite you to read the PRIMER:
viewtopic.php?f=33&t=1418
It has been written by the doctor- Stavia, also Apoe4/4 carrier and a member. It contains comprehensive explanation of the science and body functions, as well as prevention strategies, supplement list, important biomarkers, in general well written, well reasserted resource.
Another thing you can do is to order Dr. Bredesen's book: "The end of Alzheimer's". I think its the most important and ground breaking book in a topic of cognitive decline. Many member with a HUGE success have been following his protocol called: " ReCode".

I could probably keep on listing ideas, sources and strategies but I do not want overwhelm you. Please keep reading and asking questions we are here to support and help!

My best,
Magda