URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Including yourself, how many people from your family do you think are likely to enroll?

Poll ended at Fri Apr 05, 2019 5:52 am

0
2
2%
1
81
68%
2
28
24%
3
8
7%
4
0
No votes
 
Total votes: 119

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Julie G
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby Julie G » Sun Mar 31, 2019 11:31 am

If the testing and sampling is done quarterly, does anyone know why it would be a MONTHLY fee of $50-$125?

Good question, Zen. First, we are still in the planning stages, hence the wide range. We are doing all we can to defray costs to as little as possible. Second, to answer your question, this is self-funded research defrayed by both OpenCures and Prodrome Science. We are hoping to gain the NIH grant to further defray costs. We simply took the projected cost of the two year project and divided it by 24 and came up with a monthly price so as to be most accessible for those who are participating.

As you know, monotherapeutic pharmaceutical trials to date have largely failed. Some Big Pharma companies are even pulling out of Alzheimer's research altogether. There is little profit to be made from better understanding how lifestyle, diet, and supplement strategies affect Alzheimer's progress; hence our citizen scientist project to add to APOE-ε4 knowledge while providing the individual the opportunity to optimize health.

zil dunn
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby zil dunn » Sun Mar 31, 2019 11:35 am

I'm e4/e4 and soon to be 49 years old. I dabble with the keto diet and take many supplements. My dad is in memory care in Texas and my mom is in memory care in Florida. I've been preparing myself and family for proactive approach regarding my health. I need help!!!

NF52
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby NF52 » Sun Mar 31, 2019 11:41 am

Sylvia wrote:Hi - I am interested! I don't see any way to respond to the poll... This is my first post. thank you! :)

Welcome to this forum, Sylvia!

Here's a link that should take you to the post:
Poll. If you click on the dot next to the number of people in your family who might be interested, and then click on the Submit button at the bottom of that post, you should be able to respond.

Since this is your first post and you're not familiar with our site, I would encourage you to spend some time checking out some key information. Here are some handy links:

We encourage new users to share their own stories of finding out about ApoE4, their own best practices to enjoy a healthy life and any questions or favorite topics on Our Stories

APOE-ε4 Introduction is especially useful if you just recently found out you have ApoE4, or think you might and are Thinking About Testing.

The Primer is an easy-to-browse resource with topic headings of topics related to strategies to understand and manage risk that you can begin at a pace that works for you.

"How-To" Get the most out of the ApoE4.info website is a great resource for new users. It shows screen shots of how to quote users so they will see your posts, how to search topics and how to use our Wiki.
4/4 and still an optimist!

NF52
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby NF52 » Sun Mar 31, 2019 11:47 am

Lynnprep wrote:I would like to participate
Welcome, Lynneprep!
I hope you were able to find and complete the poll. Here's a link in case you missed it:

Here's a link that should take you to the post:
Poll. If you click on the dot next to the number of people in your family who might be interested, and then click on the Submit button at the bottom of that post, you should be able to respond.

Since this is your first post and you're not familiar with our site, I would encourage you to spend some time checking out some key information. Here are some handy links:

We encourage new users to share their own stories of finding out about ApoE4, their own best practices to enjoy a healthy life and any questions or favorite topics on Our Stories

APOE-ε4 Introduction is especially useful if you just recently found out you have ApoE4, or think you might and are Thinking About Testing.

The Primer is an easy-to-browse resource with topic headings of topics related to strategies to understand and manage risk that you can begin at a pace that works for you.

"How-To" Get the most out of the ApoE4.info website is a great resource for new users. It shows screen shots of how to quote users so they will see your posts, how to search topics and how to use our Wiki.

We hope you continue to post; we learn best from each other's contributions.
4/4 and still an optimist!

angelacc
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby angelacc » Sun Mar 31, 2019 11:56 am

I'm in!!

NF52
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby NF52 » Sun Mar 31, 2019 12:05 pm

zil dunn wrote:I'm e4/e4 and soon to be 49 years old. I dabble with the keto diet and take many supplements. My dad is in memory care in Texas and my mom is in memory care in Florida. I've been preparing myself and family for proactive approach regarding my health. I need help!!!
A warm hug, zil dunn,

You are to be commended for being proactive with yourself and your family during such a difficult time for you and your parents.
As a woman with ApoE 4/4 who is almost 67, with a maternal family history of strokes, heart disease and dementia and a dad who died of severe coronary artery disease at age 67, I am deeply sympathetic to someone who has to worry about her parents, herself, and her children. I have found that being proactive is empowering, regardless of what measures we take to do so. I also recognize that ApoE 4 is a risk allele, not a dominant gene that gives us no options to have a longer health-span and life-span than those that came before us. It may be helpful to you to check out this recent meta-analysis of risk from four large cohorts of people followed for many years. The risks listed in the excerpt are applicable only to those ages 60-75. People you age have many more years to implement lifestyle suggestions and likely a much better health and diet history than your parents' generation.
The Generation Study elected to disclose the following “lifetime” risks of MCI or dementia to its potential participants: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4 (with a note that risk might be lower for those with APOE-e2/e4); and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2 (with a note that risk might be lower for those with APOE-e2/e3 and -e2/e2). These values are consistent with our findings, but use round numbers for intelligibility, and broader ranges to reflect statistical and other sources of uncertainty.
[Bold font added.]
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

Since this is your first post, I would encourage you to spend some time checking out some key information. Here are some handy links:

We encourage new users to share their own stories of finding out about ApoE4, their own best practices to enjoy a healthy life and any questions or favorite topics on Our Stories

APOE-ε4 Introduction is especially useful if you just recently found out you have ApoE4. In case you have not yet decided about disclosing your status to your family members, here's a forum thread with lots of views:
Tell my children or not?

The Primer is an easy-to-browse resource with topic headings of topics related to strategies to understand and manage risk that you can begin at a pace that works for you.

"How-To" Get the most out of the ApoE4.info website is a great resource for new users. It shows screen shots of how to quote users so they will see your posts, how to search topics and how to use our Wiki.

Please keep posting; we are here to support each other in what is a journey of discovery--and hope.
4/4 and still an optimist!

NF52
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Location: Eastern U.S.

Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby NF52 » Sun Mar 31, 2019 12:09 pm

angelacc wrote:I'm in!!
Welcome angelacc!

We're always happy when new users find our site, and hope it offers you a community of like-minded people eager to learn about ApoE 4. If you have not had the chance to check out some of the forums and resources of this site, here are some handy links:

We encourage new users to share their own stories of finding out about ApoE 4, their own best practices to enjoy a healthy life and any questions or favorite topics on Our Stories

For tips on easy ways to use this forum, check out "How-To" Get the most out of the ApoE4.info website. It shows screen shots of how to quote users so they will see your posts, how to search topics and how to use our Wiki which is a constantly improving resource of in-depth information on topics of interest.

The Primer is an easy-to-browse resource with topic headings of topics related to strategies to understand and minimize the effects of ApoE4 that you can begin at a pace that works for you.

If you know you have one or two copies of ApoE 4, but have not yet decided about disclosing your status to your family members, here's a forum thread with lots of views:
Tell my children or not?

Please keep posting; we love to meet new friends.
4/4 and still an optimist!

jkramer65
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby jkramer65 » Sun Mar 31, 2019 12:15 pm

Julie G wrote:
Oh cool! Will we have access to our own data?

we'll have access to all other member's anonymized data so that we can explore which strategies appear to be having the most advantageous effects.

What determines an advantageous effect?

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Julie G
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby Julie G » Sun Mar 31, 2019 12:24 pm

What determines an advantageous effect?

You'll be provided an interpretative guide that will allow you to see whether your metabolites, proteins, and other standard biomarkers are indicative of health and longevity vs. chronic disease with results for specific diseases and categories. Our partners are still preparing a sample report, but as soon as that's available, we'll share.

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SamNZ
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Re: URGENT: Biomarker Study Opportunity for ApoE4.Info Members

Postby SamNZ » Sun Mar 31, 2019 3:12 pm

JosieW wrote:Just responded to the poll. Count me in.

Welcome Josie to our community and thank you so much for responding to the poll. How exciting to have the chance to really be a part of a group that could potentially make significant changes to the health of you and many others. The website takes a bit to navigate around and I think NF52 should have already lead you to some of the key points. Please take the time to look around, it is an amazing resource to help you understand more about the journey you are on. Keep asking questions, there are so many people about and it would be great if you could tell us a little more about yourself in the [/url=https://www.apoe4.info/forums/viewforum.php?f=2]Our Stories[/url] section of the website
Samantha McBride
Functional Medicine Certified Health Coach


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