Crazy idea...

[Julie G]

Thank you all for weighing in. I see potentially enormous benefit in telling our stories -in some format- to simply to shine a light on our dilemma. By making others aware of "us," we may be able to focus more effort on helping our population. I understand that privacy is a huge concern. For that reason, a written piece may be more doable, but I'm not completely ruling out a documentary... Please continue sharing your thoughts.

[circular]

Sometimes I've seen the faces of interviewees technically garbled somehow. Must be in the film editing software?


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[LG1]

I like the documentary idea and I would definitely do it. Maybe it is because I personally love health and nutrition documentaries so much (FedUp for one, available on Netflix).

[hill dweller]

LanceS nailed it:

Financially I have thought that a diabetes cost angle with a strong educational campaign might make health more of a national issue. Kinda like how cigarettes were probably curbed down by kids making their parents quit... getting the kids to get the message out on diabesity/alzheimers might be a strong angle to push.

Given that less than 3% of the population is ApoE4 homozygote, the hook here is the wide spectrum of insulin resistant disease: diabetes, CVD, erectile dysfunction, etc. Those conditions are common and thus, more fearsome, than the 40% frequency of AD faced by ApoE4 heterozygotes and the lower frequency faced by non-ApoE4 carriers. And most don't know their ApoE status, whereas a far larger subset of the population is at least somewhat aware of personal CVD or diabetes risk.

Lifestyle changes are always a hard sell. It's easier to pop a statin or metaformin or Viagra than reduce hyperinsulinemia. And far more profitable for big pharma.

But yes, good idea.

[Julie G]

Thanks for resurrecting this thread! Trust me, the idea is still very much alive. I've been communicating with other non-profits/big donors playing around with this idea. When the time is right (I suspect it's still too soon,) this could be a part of a larger public awareness campaign- not unlike the one for Hepatitis C.

[hill dweller]

Juliegee,

Thanks to LG1, I discovered Dr. Rhonda Patrick, post-doc w Dr. Bruce Ames, a pioneer in nutritional support of mitochondria and telomere preservation. She has done a ton of videos and I think she might be an excellent partner for this project.

I've downloaded most of her journal articles, and several of Dr. Ames (he has hundreds of peer-reviewed publications). Her website has lay papers available, too. One of the best is available in exchange for your email address: "How to Personalize Your Nutrition Based on Your Genes."

[circular]

hill dweller, I like your idea having Rhonda Patrick make an appearance in the proposed video, seeing as she's both a researcher in this area and E4. Although you haven't had a response yet here, I know Julie is aware of Rhonda.

Too bad this can't be engineered in combo with the meetup this year? Probably too much at once.

This article provides some anecdotal confirmation of my suspicion that fear of Alzheimer's would do more to get people in new lifestyle gear than CVD and diabetes, granted he references academic patients:

'Falling Dementia Rates in U.S. and Europe Sharpen Focus on Lifestyle'

The next problem will be how to motivate people to make positive lifestyle changes, Larson noted. He believes that the fear of Alzheimer’s may influence people more than other disease risks do. “I have a lot of patients who are retired faculty, and they would never listen to me when I recommended exercise to prevent heart attacks. When they hear they can save their mind by exercising, however, a lot of them start,” Larson said.

http://www.alzforum.org/news/research-n ... -lifestyle

LOVE the idea of making it a young people's cause! They, after all, will be in the caretaker and policy wonk roles soon enough.

[Julie G]

Hill dweller, I love the idea of enlisting Dr. Patrick's help with something like this. We've previously chatted about her involvement here. As an E4 carrier, she's perfectly suited to help spread APOE awareness and prevention.

As much as I love the idea of tying in our stories with a public awareness campaign, my gut tells me that it's still a little too early. We can't notify 1/4 of the population that they carry a high risk gene without accompanying evidence-based actionable information. We're making tremendous progress in that regard, but I suspect an even clearer path towards optimal health for our allele will emerge within the next few years.

I love the idea of gearing whatever we do towards a younger audience, Circ. It's clear that prevention is key with regards to dementia and an early start can make a huge difference.

[circular]

What's good will be to start planning the details the best we can so that if an opportune time suddenly arises we're ready to execute and get it out there. Kind of some sort of content and process architecture being in place. Sounds like you're already working on just that.

It will be interesting to see how much attention Bread Head attracts when it comes out.