New study examining the effect of APOE-ε4 knowledge

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Julie G
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New study examining the effect of APOE-ε4 knowledge

Post by Julie G »

Thank you for your support re. all of my family travails. It really means a lot... I wanted to briefly pop back in to share this information with you all in a timely manner. We've been invited to participate in a research study conducted by Dr. Doris Zallen of Virgina Tech, delving into the myriad implications of learning our E4 status. This knowledge has been life-changing for many of us- understatement. Our participation in this study may help to better describe the experience and better protect future E4 carriers.

Dr. Zallen has an interesting background. She is a hardcore Harvard trained scientist, but has largely turned her focus to bio-ethics. Dr. Zallen is the author of a fascinating book: To Test or Not: A Guide to Genetic Screening and Risk
Dear ApoE4 Community,

This e-mail is being sent with the permission of the Board of Directors to invite you to participate in a research study related to Alzheimer’s disease. The study is entitled: “Genetic Testing for Common Disorders: Learning from the Experiences of Individuals who were Tested to Determine their Genetic Risk for Alzheimer’s Disease”.

The aim of the study is to gain greater insight into APOE testing for Alzheimer’s disease risk by drawing on the experiences of people who have undergone such testing and to use any insights gained to help guide the development of better-informed policies surrounding this type of genetic testing.

The study is now seeking 20 participants, ages 21 and above, who will each participate in a telephone interview that will take between 30 minutes and one hour. This interview will explore the reasons for testing, the APOE-testing process itself, and any benefits or problems that resulted.

Your privacy will be protected. No publications or presentations based on this research will contain any personally identifiable information.

For further information, please contact

by e-mail: dtzallen@vt.edu
or by phone: (540) 231-4216.

Thank you for considering this request.

Doris T. Zallen, Ph.D.
Principal Investigator
Department of Science and Technology in Society
Virginia Tech
Blacksburg, VA
I hope many will participate. I've been lucky enough to speak with Dr. Zallen on several occasional. She is a lovely person deeply interested in the profound effect this knowledge has had upon our lives.
circular
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Re: New study examining the effect of APOE-ε4 knowledge

Post by circular »

Thanks for taking the time, I've just emailed that I'd be happy to participate.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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Re: New study examining the effect of APOE-ε4 knowledge

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I knew about ApoE4 before I got tested (23andme), and I got tested specifically because my father died (at 84) of complications of AZ. I wanted to know my risk.

And I came here because I wanted to know what I could do about it.

That's it. Not worth a half-hour phone call.

As it happens, I was already doing most of the right lifestyle things, but I wish I could have known earlier. Given that AD begins at least 20 years before noticeable symptoms, finding out I'm 3/4 at 70 (now 73) was a bit of an anticlimax.

Musing on this a few months ago, I happened upon a video of Kenny Rogers performing his song "Lucille" (https://www.youtube.com/watch?v=4SDVkdcO8ts), and the chorus lyric ("You picked a fine time to leave me, Lucille") stuck in my head. I converted it to "I picked a fine time to find I'm E4," and it developed into this little ditty:

In a chatroom on aging
With seniors engaging
In talk about being retired
I saw the words genome
And visceral biome
With DNA testing required
Without hesitation
I found that location
And signed up for testing on line
With high expectations
Without reservations
I thought everything would be fine

I picked a fine time to find I'm E4

Now newly retired
And duly inspired
I had expected to soar
I'd had some bad years
Fought off those age fears
Now I was hopin' for more

I picked a fine time to find I'm E4

But soon I found others
My sisters and brothers
With genomes like mine and some worse
We all pull together
We're birds of a feather
We gather around and converse
Turmeric and fasting
And hope everlasting
And SNiPs in abundance to check
We prop up our spirits
And share all our secrets
But still I'm a sorrowful wreck

I picked a fine time to find I'm E4

Too old for prevention
I cling to my pension
And try not to care any more
But I'll lose the ability
When I hit senility
To pick myself up off the floor

I picked a fine time to find I'm E4

Feel free to add additional verses if the mood strikes you. And if you can't make sense of the meter, watch the video... :D
It's weird how I'm constantly surprised by the passage of time when it's literally the most predictable thing in the universe. -- xkcd
circular
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Re: New study examining the effect of APOE-ε4 knowledge

Post by circular »

OMG that's WONDERFUL TEEZER! You are a true TALENT! I'm not even going to try to add to that. 'Nuf said xx
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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Re: New study examining the effect of APOE-ε4 knowledge

Post by marthaNH »

Teeter I really enjoyed that. You're apoe4t.
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Stavia
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Re: New study examining the effect of APOE-ε4 knowledge

Post by Stavia »

Teezer you are a treasure!!!
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Re: New study examining the effect of APOE-ε4 knowledge

Post by Gilgamesh »

Julie, I hope you and your family are doing OK.

About the study: I looked at Prof. Zallen's work and some of the reviews of her recent book and am extremely impressed. In fact -- to return to our question about whether to tell others -- Her book To Test or Not To Test might be worth having on hand to let others read before letting them know about our own status!

Speaking of testing, I have to head to the hospital for more blood tests, but I'll contact Prof. Zallen as soon as I'm back.

xo
GB
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Re: New study examining the effect of APOE-ε4 knowledge

Post by Fc1345linville »

Teezer,

I too am 73 and only learned of my 4/4 status 18 months ago from 23andme and am still smiling after reading your wonderful verse!
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Re: New study examining the effect of APOE-ε4 knowledge

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I've emailed her, for both my wife & me...
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Re: New study examining the effect of APOE-ε4 knowledge

Post by Stavia »

Me too. She's answered. She seems lovely.
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