An opportunity to weigh in on news content for our community

[Julie G]

Friends, please welcome my new friend, Deborah Kan, to our forum. Leon Chen, the CEO of E-Scape Bio (Dr. Mahley’s spinoff) introduced us several months ago. We’ve been in touch ever since discussing an exciting new project that she’s about to launch. Deborah, a former WSJ editor whose Mom has Alzheimer’s disease, is offering our community an excellent opportunity to receive in depth coverage on Alzheimer’s news topics that interest us. She is launching Being Patient, an independent news site, covering Alzheimer's disease from the patient's perspective (or in our case those who are genetically predisposed to the disease.) I hope you’ll weigh in with suggestions for how she can best meet our needs in our mutual search for information. 

[deborahk]

Thank you Julie! I am very happy to have the introduction to the APOE4 community. Please find a bit about myself and my mission below. It will be wonderful to hear from members of this community.

Best,
Deborah Kan

Being Patient/Alzheimer's - An independent news site creating clarity around Alzheimer's disease, elevating the patient's voice and providing access to the expert community.

When my mom was first diagnosed with Alzheimer's disease, the clock started ticking. I entered a race for information, looking for the answers to the many questions I had. I am used to simplifying complex topics and explaining them to people because I am a journalist. But even with my experience, I found the dementia landscape confusing so I did what surprised many: I resigned from my job as an editor at the Wall Street Journal to look for answers. As streams of information were coming at me, I asked myself what could and couldn't I believe and most importantly, where exactly was research at in finding a cure? I did what most journalist do when researching a new topic: I drew a map. I mapped the pathology of the disease - starting with the beta amyloid plaque, then tau tangles and in the later stage, inflammation and finally, shrinkage of the brain. I started plugging facts and research into my map creating a clearer picture and one that helped me understand and in a strange way, gave me hope.

The journey led me to speak with many people impacted by Alzheimer's - patients, caregivers, doctors and researchers. I met a man named Brian, who shared his story about seeing numerous doctors and finally getting a diagnosis of early onset a year later. His story made me realize that along with the roadmap to navigate, there was a need to elevate the voice of those impacted by the disease and let them weigh in on what type of information they needed. Brian's story opened my eyes to many insights from the patient's point of view. His story will be accessible in a podcast I am producing.

Along with designing a way to navigate the information, I have gone to the frontline of research and talked to the scientists who are looking for a cure. I have learned a lot about Alzheimer's and it is my desire to share the navigational tools to better understand the disease. I also want give people impacted by the disease a voice in the conversation. And with that, access to the information from the expert community to help them not only connect but to engage directly with the people who have the answers.

The Apoe4 community is at the forefront of my mind as I try to help people navigate the information. I am in the process of getting my genome mapped by Veritas Genetics. Do I have one variant? Am I homozygous? Or neither? In my mind, it's most important that we have a trusted news source that is editorially independent to help us navigate the information. Whether genetically predisposed, someone with Alzheimer's or a caregiver, it's everyone right to have access to a trusted news source and a connection to people who can give us the answers about where research is heading.

We would be most grateful to get your thoughts on what type of information you feel would be particularly helpful. As we get ready to launch Being Patient this May, please lend us your voice to the conversation and let us help you find some of the answers you are searching for.

[circular]

Hi Deborah,

I think it would be interesting to ask, say, 10-20 somehow randomly picked AD researchers, who come from a variety of reserch perspectives:

What do you think are the top 3 lifestyle factors Most backed by science to help delay if not prevent AD?

What do you think are the top 3 lifestyle factors Least backed by science to help delay if not prevent AD?

This might provide an interesting starting place for ongoing coverage of where the AD research community is wrt preventive strategies. Do they think there is anything to be said for specific strategies? Do they generally agree? Disagree? Does it depend on their subspecialty? If there are trends in the answers, can they be coaxed into teaming up to promote a strong public health message about it, despite their investments in specific research angles and outcomes?

I look forward to seeing your site evolve!

[deborahk]

Thanks @circular for your comment. You raise a very good point. There indeed needs to be more conversations between scientists and those formulating a more tailored approach to health and lifestyle. We know that there are so many factors being considered but I think what you so rightly highlight is the need for more dialogue and evidence-based learning between different approaches.

For what it's worth, Harvard's Dr Rudy Tanzi shared with me his list of what to do to prevent or slowdown Alzheimer's disease. Sharing with you:

Physical exercise
-60% decrease in incidence of AD
-at least 10,000 steps/day
Healthy diet
-Mediterranean diet: fruits/veggies/nuts, olive oil, less red meat
-Omega 3 fatty acids (vegan DHA/EPA)
Social engagement
Learn new things
-better than brain games
Reduce emotional stress
-meditation, yoga
Get eight hours of sleep every night
-sleep consolidates memory: "system back-up"
-clears debris from brain: "Mental floss"

[Julie G]

We’re so happy to have your help dissecting information, Deborah! Even that little blurb from Dr. Tanzi raises questions for me. In this article, he reiterates the dietary advice you shared as an important first step, but suggests that a vegan diet is BEST.

At the very least: Cut out fast food, cut down on processed foods, and limit consumption of red meat to no more than once a week. Better: Eat a mostly plant-based diet that’s high in olive oil, nuts, vegetables, and low in dairy products and red meat, the so-called Mediterranean Diet. Best: Adopt a vegan lifestyle that will limit your eating to only plant options. 

I’d like to see his evidence. A diet that naturally leads to a low Omega-3 index, low B-12 (hence hyperhomocysteinemia,) low Vitamin D, a low intake of choline, a skewed copper/zinc ratio, seems like it would be suboptimal for preventing Alzheimer’s. I know these issues can be overcome with careful tracking and tweaking of levels with supplements, but I would think that an optimal diet wouldn’t require such vigorous supplementation to overcome it’s deficits.

Ugh, questions/contradictions like this are commonplace for us. How about doing a deep dive into the best diet to prevent Alzheimer’s?

[deborahk]

Yes you are right Julie. I have met a number of scientists who are studying aspects related to food but have yet to meet anyone who gives a comprehensive (backed by studies) overview of the best diet for Alzheimer's prevention. I have spoken to researchers about everything from the damage of excess iron (Preston Estep writes about this in 'The Mindspan Diet') to the relationship Vitamin D has with the disease (a study being done by Dr David Llewelyn, University of Exeter,) all important but putting it into one specified diet is more difficult. If you take iron as an example, our genetics can tell us how we process iron and the formula for how much you need is dependent on your ferritin levels. My point being it may be difficult to come up with a one size fits all. This is what makes precision medicine interesting!

[circular]

Deborah your last post, mentioning research at Exeter, made me wonder about AD research around the world. I'm not really sure, but I think the reporting in our forum is overwhelmingly on research by people in the US. It made me wonder if we're missing important activities, especially related to e4, going on in other countries.. It would be interesting to see a map that plots AD researchers focused on e4 all over the world It might even serve as an awareness tool among researchers. The map could be color coded for researchers who specifically focus on e4, those who don't focus on it but stratify their participants by e4 and report on its effects, and those who don't focus on or stratify for e4. Every entry could give the researcher's name, affiliation(s) and area of research. Such a map might be gradually built up over time and if big enough could have some sort of querying database behind it to filter the results displayed. It could eventually serve as a different sort of resource for us. Sorry, this may be more appropriate as an apoe4.info project than with your project, but in these days of data visualization anything that can be mapped can help make points. I wonder if AlzForum might be interested in doing something like this. They could leverage their membership in the research community to collect and display the data. I'm not sure if there's another outfit that would work better.

[Julie G]

Yes you are right Julie. I have met a number of scientists who are studying aspects related to food but have yet to meet anyone who gives a comprehensive (backed by studies) overview of the best diet for Alzheimer's prevention. I have spoken to researchers about everything from the damage of excess iron (Preston Estep writes about this in 'The Mindspan Diet') to the relationship Vitamin D has with the disease (a study being done by Dr David Llewelyn, University of Exeter,) all important but putting it into one specified diet is more difficult. If you take iron as an example, our genetics can tell us how we process iron and the formula for how much you need is dependent on your ferritin levels. My point being it may be difficult to come up with a one size fits all. This is what makes precision medicine interesting!

Great point! I suspect that precision medicine will be wave of the future. We're just riding the first crest. After studying the nutritional science that's out there, I'm convinced that there will never be a one-size-fits all AD prevention diet. Your example re. the genes that regulate cellular iron and ferritin can be applied to hundreds of other variables including VDR mutations that regulate Vitamin D. In this thread, we even discuss specific gene snips (FADS1 & FADS2) that can help one determine how well suited one may be to veganism. For someone with the wrong genetics, a vegan diet could lead to multiple deficiencies that could actually promote neurodegeneration. That's why comments, like that shared by Dr. Tanzi in my link, make me uncomfortable.

That being said, it's disheartening to see countries that practice socialized medicine leading the way with well designed RCTs (like FINGER or MAPT) studying the effect of diet and lifestyle with remarkable success while the US continues to spend billions of dollars on searching for a pharma cure to no avail. We need more focus on nutritional and lifestyle studies so that high risk folks like us have solid information on identifying the best strategies so we can apply them early. We also need the nutrition/lifestyle researchers and the pharma researchers to be communicating in a respectful manner. The current guarded adversarial environment is hurting only us. I suspect your news outlet can help bridge that divide by refocusing the priority to be on us- the patient. Your project has the potential to be very powerful. We're honored to be collaborating with you.

[SusanJ]

I appreciate a focus on "elevating the patient's voice and providing access to the expert community" because as Julie suggests, I sometimes feel that there is a disconnect.

I also feel that non-scientists need to know the bottom line of any research. The teaser headlines that you see in Facebook and other outlets are often sensational to get eyeballs, and don't necessarily help someone to figure out what is actionable, or what research is worth watching. And part of it is doing some education. Mouse studies are interesting, but it's important for folks to know they don't always translate to human effects. And we always have to remind people that correlation is not causation.

Thank you for tackling this frontier of research!

[deborahk]

@circular, I am so excited to hear you say that because that's one of the top priorities of Being Patient/Alzheimer's. We are starting to map the research taking place around the world, in order to give our readers a clear perspective on who is doing what and most importantly, where research is headed. We have interviewed dozens of scientists in the US, Europe and Asia. So far we have only covered a small portion of what is out there but as we evolve, our map will only get better.

I split my time between Asia and the U.S. One of the problems I quickly identified was that many of the researchers didn't know what their counterparts were doing in different geographical locations. In several cases, the researchers weren't keen to share with one another, so I truly believe it is an independent news site that can help bridge this gap in information.

Please keep you comments/insights coming. It will help us so much to understand how to produce the most useful information for your community.

Many thanks!