New York Magazine writer hoping to talk with ApoE 4/4s below age 50!

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New York Magazine writer hoping to talk with ApoE 4/4s below age 50!

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Moderator Note: I'm posting this under Announcements so more of you may notice it. I will also PM some members who I know are in the ApoE 4/4 under 50 group. I suggest you send Amelia a Private Message if interested in sharing your experiences.
Nancy; an ApoE 4/4 in her 70's and going strong!
ameliaschonbek wrote: Wed May 01, 2024 9:54 am Hi everyone! I'm Amelia Schonbek, a journalist with New York magazine, who is beginning a project in which we hope to profile a dozen people who are APOE 4/4 and asymptomatic. Our goal with this project is to more deeply understand the experience of people who are in this situation: how it impacts someone's life psychologically and logistically; how it might affect relationships with family or with work; and the extent to which is it or isn't a major driver of change, fear, seizing-the-moment, etc.

I'm currently looking for people who would be interested in sharing their first-hand experience for this story. Interviews would probably take 1 hour and be in the form of a phone conversation. We hope to profile a diverse group of people, and are currently especially interested in talking with people of color and young people (in their 20s, 30s, and 40s) about their experiences. I am also very interested in talking with men, who are so far underrepresented among my interview subjects.

I'd be very glad to talk more with anyone who's potentially interested, to share more about the story and my approach, and to answer any questions they might have. You can reach me at 518 569 4198 or ameliaschonbek@gmail.com.
4/4 and still an optimist!
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lunaglow710
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Re: New York Magazine writer hoping to talk with ApoE 4/4s below age 50!

Post by lunaglow710 »

How might one join the under 50 group? I am 40 and 4/4
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Re: New York Magazine writer hoping to talk with ApoE 4/4s below age 50!

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lunaglow710 wrote: Tue May 07, 2024 1:52 pm How might one join the under 50 group? I am 40 and 4/4
Hi lunaglow710!

Since you are 40, with ApoE 4/4. you are in the under-50 age group that Amelia Schonbek is looking to talk to!

You can send her an email at ameliaschonbek@gmail.com, or you can call her at 518 569 419. You can also send her a Private Message by clicking on the envelope icon next to your username in the upper right corner of the screen, and then clicking on the small text box that says: New PM and enter her username of "ameliaschonbek"

Here's some screenshots of how to do that from our How-To Guide:
Composing a Private Message

Nancy
4/4 and still an optimist!
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Re: New York Magazine writer hoping to talk with ApoE 4/4s below age 50!

Post by lunaglow710 »

Got it, thank you! Sorry, the way I read the original post it sounded like there was a subgroup or specific "under 50" thread on the forum 🙃
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Re: New York Magazine writer hoping to talk with ApoE 4/4s below age 50!

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lunaglow710 wrote: Tue May 07, 2024 6:02 pm Got it, thank you! Sorry, the way I read the original post it sounded like there was a subgroup or specific "under 50" thread on the forum 🙃
My bad; I just see anyone younger than 50 as a kid!
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Re: New York Magazine writer hoping to talk with ApoE 4/4s below age 50!

Post by SIN »

Can one be 55 and 4/4 and already on the pathway in reducing amyloid and tau?
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Re: New York Magazine writer hoping to talk with ApoE 4/4s below age 50!

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SIN wrote: Sat May 18, 2024 9:40 am Can one be 55 and 4/4 and already on the pathway in reducing amyloid and tau?
Hi SIN,

As a member of the apoe4.info Support Team, I want to welcome you to the Forum and thank you for your question here, and also for your helpful suggestions :
Re: Statins when you’re homozygous APOE4
Hi I’m 4/4 with a very high CT calcium score and 3 stents - I was advised to come off statins and instead take Repatha and Ezetimibe - seek out a Cleerly heart scan also - you’d be looking for old calcified plaques which are preferable to the softer new plaques which are more prone to rupture - heart disease nowadays is largely preventable - Alzheimer’s is moving in that direction also in my opinion
and here: Re: anyone tracking p-tau over time?
I’m a 4/4 mid 50’s - have an amyloid probability score (APS2) of 25 ( negative ) - they measure Tau 217 through the Precivity AD2 Blood test offered by C2N diagnostics
If your question about being on the path to reduce amyloid and tau in your 50's is related to your terrific efforts to reduce your cardiac risk by taking Repatha and Ezetimibe, I think that's a great-- but as yet unanswered-- hypothesis! The fact that you and your cardiologist have concluded that the newer generation drugs will be more effective in keeping your coronary arteries healthy by reducing LDL-C and LDL-P (and maybe lp(a) if you have a high inherited level on that), is also protecting your brain's vascular system and likely reducing inflammation.

It is unclear what the best methods are to reduce the rate or amount of amyloid and tau increase in us ApoE 4/4 carriers. But at age 72, I am in a clinical trial (AHEAD-45) for people with normal cognition and elevated amyloid that seeks to answer the question of whether an anti-amyloid passive immunization therapy (lecanemab) is both safe and "disease-modifying". Expect lots of results over the next few years from this and other trials. More importantly, expect that better MRI imaging techniques being developed now by MRI physicists (Yup, that's a job!) will show vascular health and cerebral amyloid angiopathy much better than we can do now. It's likely that by the time you are in your early 60's, you and your cardiologist will have great options to monitor, prevent and, if necessary treat amyloid and tau.

The NIH and Alzheimer's Clinical Trial Consortium (ACTC) is starting a new round a of 20-year long study called Alzheimer's Disease Neuroimaging Initiative that has been conducting repeated brain imaging, blood tests and cognitive assessments in people with family history of AD, and/or elevated amyloid and/or genetic risks like ApoE 4. They are focusing on just these kinds of questions in diverse communities (rural/suburban/urban; genders; racial and ethnic groups, etc.) in ADNI4.

Part of the reason for the delay in answers is that it was only in 2017 that an Amyloid PET scan was approved that could measure amyloid plaques in the brain. And it was almost exactly 4 years ago, in May 2020, that theFood and Drug Administration approved 18F-flortaucipir under the trademark name Tauvid, for a very specific. use:
estimation of the density and distribution of aggregated tau neurofibrillary tangles in adults with cognitive impairment who are being evaluated for Alzheimer disease (AD).
https://jnm.snmjournals.org/content/61/10/1409

Just in the last few years, rapid advances leading to blood tests like the PrecivityAD test that gave you a low probability of having a positive Amyloid PET scan. That test and others like it have about a 95% accuracy rate overall, and the accuracy for a "low" score is likely even higher.

It appears from the attached chart that amyloid was rarely measurable before age 50 even in 4/4 carriers (in red), and only reached the level of 20 centiloids for most in the mid-to-late 60's, earlier than for ApoE 3/3 carriers (in green).
Changes in PET amyloid by ApoE and Age.png
Many ApoE 4 carriers with a positive Tau PET still had normal cognition (CDR=0) on this chart.
Supplementary Figure 3. Tau-PET SUVr by age and CDR score

In the meantime, here's some quick resources on the forum:
The Primer is written by Stavia, a practicing M.D. with ApoE4/4. It's a great place to see some strategies that you can consider--and she also recommends not trying to re-tool your entire life at once!

The How-To Guide shows how to quote members (use the " icon in the upper right of any post) so they get an email notification of your post. It also shows how to use the Search function for topics, and how to subscribe to topics of interest.

Here's a link pulled from our Wiki on Research, with a 2018 article on strategies for LOAD prevention in ApoE 4 carriers from Dr. Richard Isaacson, the Director of the Alzheimer's Prevention Program at Cornell Weill Medical Center in NYC: Clinical Application of APOE in Alzheimer’s Prevention: A Precision Medicine Approach Here's his top recommendation from the article:

Physical activity
A systematic review of 16 prospective studies concluded that physical activity decreased the risk of developing AD by 45%
Physically active ε4 carriers had an OR [odds ratio risk of Alzheimer's] of 2.30 and sedentary ε4 carriers had an OR of 5.53
Aerobic activity was associated with greater cognitive performance for ε4 carriers compared to non-carriers).
Sedentary individuals who were ε4 carriers had significantly higher levels of brain Aβ and lower levels of CSF Aβ42 compared to sedentary non-carriers, findings associated with AD pathology
...The findings also suggest that physical activity may prevent Aβ accumulation that occurs in the brains of ε4 carriers before clinical symptoms of AD even become apparent
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4/4 and still an optimist!
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