Some of the most valuable and meaningful insights a person can receive when facing familial Alzheimer’s disease (FAD) come from the stories of people within our community.
In this interview, we hear from Marty Reiswig, a husband, father, and entrepreneur whose family is one of only a few hundred on earth known to carry a PSEN2 mutation. His grandfather became symptomatic in his forties, and the disease later struck his uncle and his dad.
Marty is a co-founder of Youngtimers and one of the earliest participants in the Dominantly Inherited Alzheimer Network. He has spoken at the World Dementia Council and been featured in Nature and on CBS News.
In this interview, Erin, board member and volunteer at Youngtimers, talks with Marty about:
Growing up with Alzheimer’s in the family, and the reunion where it stopped being an idea
Choosing for years not to learn his genetic status, and what changed his mind
Why research participants, not money, are the biggest thing holding back a cure
Talking with his kids about an FAD mutation at every age
The gratitude practice he built after his results came back
And more…
This conversation reflects Marty’s unique perspectives and experiences as shared with us on March 26, 2026. His story is his own, and it adds a valuable chapter to the diverse narratives within our Youngtimers community.
This transcript has been edited for clarity and readability. For the full interview, watch the video.
ERIN: You grew up somewhat removed from your dad’s side of the family. What did you know about Alzheimer’s as a kid?
MARTY: As a kid, it never really struck me that I had already lost my grandfather when I was one. I never knew him. Even before I was born he was very sick and already in nursing homes. I had my local grandfather, my mom’s dad.
I grew up in Greeley, Colorado, a small city. You can drive across the entire thing in 10 minutes. My grandparents and my aunts and uncles, they were the Lancasters, my mom’s family. Every now and then we would see the Reiswigs. My grandma Esther would come to visit, or we would get out to the Kansas and Oklahoma area and see some family, but not very regularly. I didn’t see the disease in our family firsthand until I was in my late teens.
I knew that Alzheimer’s disease ran in our family, but it didn’t really strike me until I was in college. I was dating my girlfriend at the time, my wife now, and we went out to Beaver, Oklahoma to a family reunion. I wanted to meet everybody, see everybody, introduce everyone to her.
That’s where I really saw it firsthand. My uncle, who was only in his late 40s, was already struggling with some basic things. I was like, oh no, I think Uncle Roy has Alzheimer’s disease. It’s different when you are 19 or 20 years old and your uncle, who looks very healthy and quite young for adults, is suddenly not acting right. It hit me that that could be my dad next, and that could be me after that, and my brother and my whole extended family. Sure enough, we went from the restaurant over to the gymnasium where the family reunion was, and there were several people there who were sick with Alzheimer’s disease. It wrecked me. It brought it from a concept to a reality. That’s when it hit me hard.
Then you get back to college and you’re dating. We graduated, we got married, we had kids, we moved back here to Colorado from Indiana. Somewhere around age 30, I got hold of a copy of a book my distant cousin Gary Reiswig wrote, called The Thousand Mile Stare, describing the look that a loved one gets when they’re sick with Alzheimer’s disease. In that book he interwove our family’s story and challenges with the disease along with the scientific developments throughout the years. Them discovering that it definitely was a genetic mutation, and that it was dominantly inherited, so it was a 50-50 chance.
All of these things were getting revealed to me, going from “Alzheimer’s disease runs in the family” to “oh man, this really runs in the family” to “they’ve now mapped the human genome, and these genetic mutations are a 50-50 chance for every child.” Suddenly it was very real to me, because at that point my father had already gotten sick and was struggling to tell stories.
I got to the back of that book and it mentioned the DIAN study, which was a fledgling startup study at that point that just wanted participants like us in a longitudinal observational study, so that they could start to learn how the disease progresses, what causes it, and what stages it goes through. That’s when my brother reached out and said, hey, maybe we should participate in this. Thank goodness for him. My dad and I also, all three of us joined the DIAN study as early as we could.
[Editor’s note: DIAN stands for Dominantly Inherited Alzheimer’s Network. It’s an international research partnership of leading scientists who are studying familial Alzheimer’s disease. Learn more about participating in research.]
ERIN: Few of us will ever discover that much about ourselves in one place. What was it like to read that book?
MARTY: At that point I knew my Uncle Roy had already passed from the disease. I knew it had already wrecked my dad, and that he was on the slow slide of Alzheimer’s disease. He was unable to drive, unable to tell very many stories. He could still ski. We would go skiing. The disease was already very real.
But to discover that my grandfather was one of 14 kids, 12 of which lived long enough to get Alzheimer’s disease in our family, and 10 of that 12 got it. Reading that, and seeing the now infamous family photo of those folks. It was almost a revealing. This cousin I’ve never met knew so much and I knew so little.
My parents had chosen to live life to the fullest and not worry about it, and what comes is going to come. I respect that too. That’s a way to handle it, and they handled it well that way. But I was suddenly revealed all of this information.
It took me a while to really process and talk with my wife about it. What does this mean for us? I now have not just a chance of getting Alzheimer’s disease, but a 50%. It’s a coin toss, and for whatever reason it seems to turn up tails more often than heads. Things don’t go very well. Ten out of the 12 of my grandfather’s generation. It was really challenging, really stripping, and it took some time to process.
One of the big things I could do to process it was to join the DIAN study and get after it. If this is part of my story, I better get busy living rather than get busy dying.
““If this is part of my story, I better get busy living rather than get busy dying.””
ERIN: Your family stands out as a clear pattern that researchers could learn from, and those early stepping stones got us where we are now.
MARTY: Thanks for the kudos, but I really sit on the shoulders of giants. My cousin Gary was brave enough to write the book, and a lot of people in the family, I’m sure, did not want that book to be written. Before him, my grandma Esther was kind of infamous for how feisty she was and how persistent she was about making this public.
My grandma Esther saw what was happening. Then it started happening to her husband, and she shuttled him all over the country trying to get someone to pay attention to him, at universities and hospitals and different doctors and specialists. She finally got the attention of a university here in Colorado, as well as in Pittsburgh. Because we get it in our late forties to early fifties, it did get conflated a lot sometimes with late sporadic Alzheimer’s disease. She went to Washington and spoke. She did everything she could to make it obvious that this is a real problem in this particular family that’s unique, so what can we do about this? She was trying to solve it for us.
She had a couple of famous sayings. She pushed a lot of buttons when she would recommend strongly to people that in our family, nobody should have kids. That was her solution. Let’s all make a pact to not have any more children, and then we won’t pass it down to anyone. Of course everybody kind of hated that. No, I’ve lived a good, long, enjoyable life. Just because the end is terrible doesn’t mean I don’t want to live, or that I don’t want to have kids, right?
She also said something that I think was actually really wonderful. She said, live life before you’re 50, because in our family you never know.
The University of Pittsburgh really took a lot of interest in us, and she even surprised everyone. I can’t believe she did this. She surprised everyone one year at a family reunion by just letting the researchers show up unannounced and try to collect blood. Again, that was very intrusive. But she believed that we held some really important information in our bodies, and it turns out she was right. Our family tree is the most studied family on the planet about this. Deep in our genes and our biology holds some key information, if not the information that leads to a treatment.
ERIN: There are a lot of polarities in the world of FAD: public or private, to have kids or not, to test or not to test. You’ve lived on both sides of the genetic testing question. Can you talk about your journey with genetic testing?
MARTY: If you don’t mind, I’d like to take just a moment for anybody who stumbles upon this video and declare there is a massive difference between the APOE4 gene mutation that a lot of people in the public do get. There’s like a 25% chance you end up with APOE4, one copy of it. If you end up with two copies of it, you do have an increased chance of having Alzheimer’s disease. If you’re here because of that, you’re in the wrong spot.
These three mutations are APP, presenilin 1 [PSEN1], and presenilin 2 [PSEN2], and these are determinative. If you have one of these genetic mutations, you will get Alzheimer’s disease, and you’ll get it around the same age as your family members got it. It usually is not past age 60. I just wanted to make that distinction in case somebody is here watching this.
Now, let’s talk to the community of people who do have these rare penetrative genes. For a long time, I did not want to know my genetic status, and neither did my wife. I really wanted to honor her in that. Whenever I would bring it up, that I thought I kind of wanted to know, she would just very lovingly say, I just don’t want Alzheimer’s disease to take any more joy than it has to. She was basically stating that she was afraid I would be more sad, more afraid, and things like that. She’s probably right, and she knows me extremely well. So together, we determined that I didn’t want to know my genetic status.
[Editor’s note: Members of the Youngtimers community often refer to “the gene.” Throughout this interview, when Marty refers to “the gene”, he is meaning “a genetic mutation that causes familial Alzheimer’s disease.”]
I went from being in an observational study to being in a drug study with DIAN. In that study there was placebo and two different drugs we were testing, and that went for five years. At the end of that study, one of the drugs didn’t do much. Then there was the placebo group, and then there was gantenerumab, and it was really effective. For the first time in human history, the disease upstream was being nudged. The biomarkers were being impacted the way they were supposed to be. In other words, gantenerumab was effective in helping to reduce the beta amyloid load in the brain.
The FDA gave the DIAN study a three-year open-label extension. But everybody had to know their genetic status, because everybody was going to be on drug, no placebo. That was in 2020. I would have been 42. I decided at that point, well, I’m in my forties anyway, and there’s an opportunity to get on a drug that can help me. For me it was kind of a no brainer. It wasn’t a fun thing that I was looking forward to, but the decision felt like it had almost been made for me by timing and opportunity.
I went through the genetic counseling. There are a few phone calls to make sure you have a good support system, things like that. Then the time came for us to set an appointment for the reveal. I decided I did not want to have my genetic status given to me at home. I’m a very visual spatial person. I’ll drive down the road and remember each restaurant that I’ve eaten at, and who I met there, and what conversations we had. That’s just how my brain works. I just didn’t want to have that conversation at my house.
We only told one couple, dear friends of ours. We only told them that we were going to get our gene status revealed, and please pray for us and support us in that. We went off to a small Airbnb in a tiny little mountain town up here in Colorado called Manitou Springs. That four o’clock phone call came in, and I had given the genetic counselor very strict instructions to please be very clear. Don’t tell me, “You’re negative,” because negative might mean that I don’t carry the gene, or this is negative bad news. What she did was, I said hello and she said, Marty, I’m sorry to tell you. I didn’t need to hear the rest.
I got upset. I threw the phone down on the couch, and my wife and I just sat and cried and swore and punched a couple of pillows and cried and cried and cried. Then there were moments of silence, and then more tears and things like that. It was just the worst day of my life. Not only for me, but also for my kids.
My brother doesn’t carry the gene mutation, and I’ve always been so envious of that freedom. Knowing that he didn’t pass it on to any of his kids, because you can’t pass on a gene you don’t have. I’m so glad for him and his kids.
Eventually the tears wear out and we got hungry, and we thought, well, I guess let’s go to dinner. So we went to dinner and talked about what decisions we wanted to make. If there were any changes we wanted to make in our lives: do we want to change work, or location, or any relationships or habits or spending or anything like that. We had determined a long time ago that we’re going to live as if we do carry this genetic mutation, in case I get it. Because if we live as if I don’t, and then I get it, I know I would have some regrets about how I spent my time, energy, and money.
At that dinner we pretty much decided there’s not much we really want to change. Over the next couple of weeks we told our kids while we were on a pop-up camper trip to Yellowstone National Park, and then we told my brother and sister-in-law and my mom, and eventually I was willing to share it publicly.
It was tough telling the kids, of course, and my brother. But the worst of that was telling my mom, knowing she had already been a caregiver for my dad, and knowing how much she loves us kids and her grandchildren. Without proper drug intervention, it’s entirely possible that she will live long enough to help my wife be my caregiver. That’s just brutal. That’s brutal.
Learn more about weighing this decision in our Guide to Genetic Testing.
ERIN: Many people are not in a position to talk about what they’re experiencing, so the public stories matter. When did you decide to share yours?
MARTY: I don’t think I ever sort of made that decision. I think it was just what felt natural to do. I had experience in public speaking, and I knew I had a story to tell that would help others and would help push our cause forward. I had no idea it would bring such public attention. I had no idea that I would end up on large media platforms or anything like that.
I got to be one of the people who shared at the very first DIAD family conference in Washington, and I felt comfortable sharing in front of people enough that I knew it was important for me to continue to share.
[Editor’s note: DIAD stands for dominantly inherited Alzheimer’s disease. The DIAD Family Conference is an annual gathering for families affected by familial Alzheimer’s disease.]
Interested in sharing your own story?
Learn more about contributing to our community story series.
Also, because I’m a solopreneur, an entrepreneur, I’m the boss, so nobody can fire me. My clients could fire us. I think it’s possible that my real estate practice has suffered because people might see my story and worry that I’m not sharp enough or whatever. But those are assumptions they’re making, and if that’s a decision, I support that. If I make a little less money but really push this cause forward and share our story widely, especially representing the people who can’t share it publicly for whatever the reasons are, and I respect all of those reasons, believe me, it’s my role and my opportunity and my joy to represent all of the folks who can’t or won’t share their story, and share mine instead.
ERIN: You enrolled in the DIAN study without knowing your genetic status. Not everyone knows that’s possible.
MARTY: What’s fascinating is that even more than money, and even more than increasing the number of scientists, the main factor holding the world back from more cures, not just Alzheimer’s disease but others, really is participants.
It is very, very difficult for them to enroll folks, especially in our middle life era. We’re having kids, we’re having jobs, we’re bustling around. It’s really difficult. The more research participants and drug participants are willing to participate and give of their time. We do get some basic compensation for it, just in return for what we’re doing, but nothing you’re making money on. It’s almost like repayment. And that’s what pushes the science forward.
If you’re watching this video, please just participate, even if you don’t carry the genetic mutation or you don’t know your gene status, because we also need controls in the group. Like my brother, who ended up not having the gene mutation, he participated for many years before bowing out. It’s really important work.
ERIN: What should someone know as they grapple with whether to learn their genetic status?
MARTY: I’ve had the opportunity over many years now to be in breakout sessions at the annual DIAD Family Conference, where there’s almost always a breakout session about this exact topic. It’s been really fascinating. Almost every time I get that opportunity, I’ll ask, how many of you have chosen to find out or definitely do want to find out, and how many of you are just like, no, I don’t want to know yet, or I’m not sure. And it’s almost always 50-50.
The very first thing I would say is that it’s an extremely personal decision. Nobody can make this decision for you.
That being said, what’s very common for people is to really analyze their life and ask themselves, is there anything I really want to change about my life if I’m gene positive? If I am a gene carrier, would I move to be closer to family who will be my caregivers, so that my spouse is more supported, or so that I am supported? Would I quit my job because I hate my job and I don’t want to continue this job for the next five years before I get sick, or the next however many years? It’s an interesting thing. You begin wondering, how then should I live my life? Whether you find out or not, because either way it runs in your family.
There’s just a lot to process. I would seek wise counsel, seek a good therapist, especially one who’s maybe worked in geriatrics or worked with seniors, because frankly they deal with the solidification of mortality. You become very aware when you’re older that you’re going to die, and like, how do I process that? Right? And so that’s kind of been thrust down a generation to us. Here we are in our 30s and 40s going, my gosh, I really am going to die someday. This is not just an idea. So what do I do with the time left that I’m given? I would seek wise counsel, talk about it, don’t just internalize it, don’t let it build up.
On the practical side, Erin, I would say that today, more than ever before, we do have these two FDA approved drugs, at least here in the US, that you can get on as soon as you are symptomatic. And there are even more effective ones coming down the pipeline. Someday it won’t be an infusion, it’ll just be a shot, and after that it’ll hopefully be a pill.
[Editor’s note: As of this conversation, the two FDA-approved treatments for early symptomatic Alzheimer’s disease in the US are Leqembi (lecanemab) and Kisunla (donanemab). Both are anti-amyloid drugs, and neither is approved for people who do not yet have symptoms.]
If I had to just put it really concretely, if you were asking me, “Marty, should I find out my genetic status?” Number one, that’s an extremely personal decision and you can’t unknow it, so do it wisely. But number two, as a big factor in your decision, understand that if you can possibly participate in one of the DIAN studies, they have already proven to be effective. From my perspective, knowing what I know, I would say, why wouldn’t you want to find out your genetic status in order to get into one of those studies, so that you can get on drug as early as possible? These drugs have all been proven to be exponentially more effective the earlier the drug gets applied to your body. Not only are you possibly going to get shut out of a study when they get full, or just stop enrolling, and miss out on the opportunity altogether, but also literally the sooner the better, and not just by a little, but by a lot.
I do want to start off by saying I’m sad for anybody who is in this situation and does not get this benefit. I understand that I might be one of the few that this positively impacts. But I will say that I’ve been on gantenerumab, and then they switched it to Leqembi, for, I believe, three out of the last four years. And I’m happy to report that my NfL levels are completely average for my age and gender. NfL levels are like a measurement of how much neuronal death you’re having. Everybody has some after the age of like 25. But if I were within 10 or 15 years of getting symptom onset, which I definitely should be, my NfL levels would be one to three standard deviations too high. To have that come back as normal was just a huge relief, just an amazing sort of scientific and medical accomplishment.
Of course, the drug study is double blinded, so we don’t know anything. But privately, I went and found that out, and that was absolutely incredible news. I just recently got that news a month ago. We went out to a giant steak dinner and I was like, I don’t care how much the steak costs. This is incredible.
I encourage anybody who meets the criteria to get into one of these drug studies, with the DIAN study or anywhere else that is doing anti-amyloid drugs many years before age of onset. The earlier you get it the better. There are some people in my study who aren’t doing as well as I am. Unfortunately, I think it’s because they didn’t get active drug until they were closer to age of onset. It’s the years ahead of age of onset that counts the most.
ERIN: Congratulations on that news! The calculus of learning your genetic status now looks very different than it did even five years ago.
MARTY: Not only that, but I do love the saying, and I can’t remember if it was Dr. Bateman that told me this, and it’s so obvious anyway, and that is: the very first survivor, or the very first person cured of anything, is always in a study. Always. It’s someone doing something different on the cutting edge who gets that benefit first. If you are not in a study, you’re going to get the benefit later, hopefully.
““The very first person cured of anything is always in a study.””
That’s a fascinating thought, right? So I would say, if you can handle the news that you do carry this genetic mutation, and it is the worst, if you can handle it, if you and your loved ones can handle it, I would say get into a study and find out your genetic status, because why not live in truth and information, and just deal with the realities. Even if it’s bad.
I found out my gene status because we had a hopeful drug, not because we knew we had a sure thing. And I also found out because I was 42, and it’s probably time that I really started facing reality, because I could get sick at about age 45, 47. I need to deal with reality.
Learn more about joining a study in our Guide to Participating in Research.
ERIN: You have teens, and you talked about your choice to tell them what was going on. How did you approach talking to your kids?
MARTY: Yeah, this again, this is a sticky topic. So if I say an opinion that you don’t agree with, that’s okay. What we have done throughout the entire process, because I’ve actually been doing this now for over 15 years and my kids are 20 and 18, is that they’ve grown up with knowing. When they were really little, they just knew that I was going to St. Louis once a year for the observational study. And then eventually I was on that five years of getting an infusion. So they knew that I was in the study, and they knew that I was doing that because Papa had gotten sick and I wanted to help. What we did is we just explained it at an age appropriate level.
And we didn’t talk about it all the time, right? It was really just, here’s what’s going on, do you have any questions? And they’re like, no, not really. Or, yeah, what is that medicine you’re taking? And it was like, well, I might be getting medicine, I might not. And this medicine might be working, it might not.
There was a DIAD family conference several years ago that occurred in London, and during one of the breakout sessions it was about this exact topic. The professional who spoke and did Q&A at that breakout session was an expert, and I mean like a 15 year veteran expert in the field of Huntington’s disease. Huntington’s disease mirrors ours very, very well. It’s a dominantly inherited genetic mutation, and if you carry that gene you will get Huntington’s disease and it will end you. It’s a terrible, terrible diagnosis. That population deals with almost exactly the same problems that we deal with around this topic.
And she said, it is well known in that Huntington’s field that the longer you keep it a secret that this is a dominantly inherited genetic mutation disease, the worse their response and reactions are, because they feel like you have lied to them or deceived them. They are old enough now to realize that there’s massive ramifications, and they weren’t eased into this information over the years. And many times it can lead to self-destruction or self-harm, or just mental emotional challenges that really could have simply been avoided by telling them and explaining it all much earlier.
[Editor’s note: Families do not have to work through these conversations alone. A genetic counselor, a therapist, or others in the Youngtimers community can help a family think through what to say and when. Learn more about finding a genetic counselor, or connecting with our community in peer-to-peer matching or support groups.]
So that’s all I would say, is experts would say kind of the earlier the better. Explain it, normalize it, walk through these things together as a family unit, let them see that they can support you through it and how that can work. Right? Be humble enough and open enough to be like, yeah, I’m having a really terrible day. I’m sad about my genetic mutations. This is making me cry today. And they’ll hug you at whatever age, they’ll hug you and be like, it’s going to be okay, we’re here for you. Then they’ll also see you in the great times too. You can still have a lot of fun when you have this genetic mutation. You can laugh about the things you forget, and you can go and have a good time as a normal human being for as long as possible.
Nobody gets off of this mortal coil alive. Some die quickly and some die slowly. But even between now and death, there’s difficulty, and how you deal with difficulty can prepare them and can mature them along the way. Hiding it, or trying to pretend that difficulties don’t exist, or trying to keep your kids from going through all difficulties, is a natural desire to want to pave their way and make it easy for them in life. But in my opinion, it doesn’t serve them very well. I think they are better served by letting them go through difficulties, and even letting them watch you go through difficulties, and doing it together as a family unit, so that when they’re older and they have kids or friends or partners or spouses, they might do it well like you did, and maybe even better.
Learn more in our Guide to Talking with Kids about Familial Alzheimer’s Disease.
ERIN: You’ve been on the front lines of building community in FAD, first with a Facebook group and then as a co-founder of Youngtimers. Why did you spearhead that?
MARTY: It’s funny how some things end up really well, and you don’t think about it when you’re just starting out sometimes. Listen, I was just a young man who was lonely and scared. I didn’t want to be alone in this process of dealing with familial Alzheimer’s disease. I didn’t even know that’s what it was called. I just knew that I had read my dad’s cousin’s book and I needed help. I needed somebody else to talk to.
So I started a private Facebook group, and each time that we went to the DIAD family conference, I would try to ask people to join that private Facebook group. And I shared with the DIAN WashU site that I had this private Facebook group, so anybody coming through here, please tell them to join. I just wanted to talk to people. I needed help. They might need mine. So that’s how that was born.
And then several years later, Lindsay actually approached me at one of the DIAD family conferences. She caught me and she said, Marty, I want to talk to you about something. I think we need something for us, by us. And she expressed to me that we need something sort of like the Alzheimer’s Association, but only just for us, because what we go through is so unique and so different than late sporadic Alzheimer’s disease. We really need support and education and maybe some advocacy and real community and fabulous information and things like that. So it was her idea, and she was just like, I think you should do this, I think we should do this. And I was like, listen, it sounds like it’s a great idea. I think it’s your idea, and you’re amazing, and you should do it. And if you want me to be a part, let me know.
And sure enough, she did. She took it and ran with it, and then contacted, I believe, Alicia earlier on, and then eventually contacted me to be a co-founder as well. And kind of the rest is history. We have hundreds of sort of participants in our Youngtimers community. Youngtimers.org gets a lot of visits. It has a ton of videos and articles and everything, and it’s so, so helpful for people. And you, Erin, have come along and made it really, really great online. So yeah, I’m really proud of it, and it’s an opportunity for us to gather and learn and connect. And it really is always ongoing. We find out more and more and different information and experts. It’s a wonderful thing to be a part of.
ERIN: Every time you forget a name or miss an appointment, the question is there. How do you handle the fears around daily forgetfulness?
MARTY: Prior to my good news lately, I’ve just done a lot of crying. I would have a time like that where I would be on a meeting and I couldn’t think of a word or whatever. And then the meeting would end and I would just be like, dang, this sucks. And sometimes it would derail me for the rest of the day, and I’d just be like, I’m taking a mental health day. I’ve got to go golf, or I’ve got to go hike, or I’m going to go for a beautiful drive, or I’m going to go eat my feelings.
So I think as long as it’s not detrimental, coping mechanisms are important, whatever they are, as long as they’re healthy-ish. And just accepting that this sucks. And also remembering that I am my own worst critic. So just because I forgot somebody’s name doesn’t mean anybody else even noticed. And it doesn’t mean I’m any different yet. These things really have to get bad for you to be symptomatic.
My wife would say, cut yourself some slack, you’re totally normal. Give yourself a lot of grace, because everybody forgets, and try not to catastrophize. That’s the biggest one.
In order for me not to make a big deal out of these small memory lapses or word finding issues, I finally decided that a solution for me was to ask my wife, my brother, and my best friend, all three of them: I am asking you to please tell me as soon as you think I might be experiencing any symptoms whatsoever. I’m not giving you just permission to do so. I want to know. So I want you to proactively tell me, and that way it kind of let myself off the hook a lot. I took the hook off of me and put it onto my loved ones and said, okay, now I’m just going to act like everything’s fine until you tell me otherwise. Because this is driving me crazy.
ERIN: They’re in a better position to observe it than you are.
MARTY: And for me, I have two small businesses. I have a real estate brokerage and I have a commercial janitorial services business. So my decision making is really valuable and critical for other people’s lives and livelihoods. I don’t want to be making mistakes while my family and friends are like, I think he’s sick. No, I want to know.
And also I’ve told them all, look, I’ve got a note on my phone where I have compiled over time what I want to do day one that somebody tells me, Marty, you’re finally sick. I’ve written out here are the things that I want to do that day. Here are some reminders. Hey, everybody still loves you. Hey, you still can contribute to the world, right? I’ve got some songs I want to listen to. I’ve got some things I want to go do, some things I think I might want to go eat. Just a default so that I don’t freak out. And then also, here’s some longer term things. Here’s what I want to do over the next few months and years while I think I can still have those capabilities of doing those things. So don’t deny me of an opportunity to do all of that by thinking you’re being nice to me by not telling me. That’s just how I’ve played it. Everybody plays it differently, but I want to know day one as soon as anybody thinks I’m sick.
ERIN: You’ve lived with the knowledge that your productive life might be cut short, and now that moment is fading into the horizon at an unknown distance. That’s so much to handle mentally.
MARTY: Yeah, thanks for pointing that out. It’s funny, I’ve said that a lot to my wife. I feel like I have experienced a lot of whiplash, and after each one of them I’ve had to reprocess, recalibrate, and kind of re-decide what is true north, what’s true about me, what’s my identity in this.
I went from a 50-50 chance of having the genetic mutation to finding out that I’m a hundred percent. What does that mean for me and my timeline and my loved ones? It kind of comes down to time, money, and relationships. But what do I want to do with those things? And then I get on this drug study that’s like, well, maybe this is helping me a lot. And it seems like every time any data comes out, not just from our study but from others, these drugs are really effective. So then it’s like, well, I don’t know anything about myself yet, but maybe I’m going to get even longer than I thought. And so then it was like whiplash, like, shoot, maybe you’re a little bit more normal. And then lastly, now I’ve got this really good whiplash. So now I’m back sort of across the line to like, I think I might be kind of normal, in that I don’t know when I’m going to die anymore. I thought I had accepted that. And so now I’m like, well, how do I deal with that?
It’s been a fascinating thing. You want to know a really strange thing, Erin? Now that I know my NfL levels are really good, I also took the PrecivityAD test and it scored me as a zero, absolutely no beta amyloid load. What it tests for everybody, the results might be very different and misleading for us gene mutation carriers than they are for the general public. But all of these results have told me and my wife that I might not be symptomatic for quite some time. If ever, actually.
[Editor’s note: PrecivityAD is a blood test that estimates the likelihood of beta amyloid in the brain. As Marty notes, results for people with an FAD mutation can differ from results in the general population. Blood biomarker results are interpreted alongside a person’s full history by a clinician or study team, and a single result does not predict when or whether symptoms will begin.]
So here is an unintended consequence that has occurred. It is the most weird thing. Prior to getting that news, I would subconsciously avoid using proper nouns, like the name of the restaurant we were at, or the name of a street or something like that. I would avoid specificity in my verbiage, and I would also avoid pausing for word finding of a very specific correct word to use to describe something. I was dumbing down myself so that I could almost mask that I thought I was already starting to have early symptoms. It was maybe a protective thing that I was doing for myself, but it’s because I legitimately thought, it’s one of the reasons I took the NfL test, I legitimately thought, I think I’m starting to get symptoms. I think I’m slowing down my pace of speech. I’m seeing all of these things, right? And you know what’s crazy is, since finding out that I’m fine for now, all of that has gone away. I’m using proper nouns, I’m naming so-and-so, I’m doing such and such, I’m using bigger vernacular, a larger lexicon of things, and it has freed me up to really just be myself again.
ERIN: Can you talk about your practice around optimism and gratefulness, and how that’s played a role in all of this?
MARTY: You know, I just don’t love being sad. So I knew that I wanted to continue to live a happy-go-lucky kind of a life and be a positive impact on myself and on others. I had to figure out ways to do that. One of them is to just take a lot of self-care. There’s actually a lot of studies around sort of proving out that gratitude can help a number of mental health challenges.
I’m not suggesting that we not grieve our situation, that we not grieve and mourn our loved ones. But when you’ve cried all the tears you can cry at that session, one of the greatest band-aids and healing things you can do is be grateful. After finding out my genetic status, I spent time each morning just in a gratitude journal. And each day I would write down five things that I was grateful for. And the rule of thumb was I cannot repeat anything from previous pages. I have to figure out five new things every single day to be grateful for.
And they’ll get really, really specific, and they’ll get really, really grandiose, and they’ll get really vague. And it doesn’t matter. It just matters that you’re remembering how good things are, how good people are, how good you are. So that helped me a ton. I also spent some time kind of researching and studying the Stoics and applying some of that practice to my life.
I’ve also been a long time Christian. There’s good perception of that and bad perception of that, and I understand that. My perspective of Jesus is that he was basically a Middle Eastern monk. That’s where he lived, in Israel. And so I just perceive him as such a kind, patient, loving person, and tried to teach us how to do that, how to live that way, with kindness and grace and generosity. So in my efforts to follow Jesus, I spent a lot of time ruminating on faith, hope, and love. Faith is being sure of the things that you do not see. Hope is being confident that things are going to be all right. And love is wanting for someone else what is in their long-term best interest. And so in studying those things and ruminating on those things and feeding myself those things, I continue to be happy.
I think we as people can naturally and intentionally and unintentionally feed ourselves a diet of thoughts. We can do so by what we scroll, by what we watch, or what we listen to, but also by how we talk to ourselves, and who we talk to about what topics and things like that. If you give yourself a steady diet of negativity, you’re going to feel that way. What goes into the oven doesn’t come out completely different, right?
“The ingredients we give ourselves every day bake up who we are and how we think.”
And so the ingredients we give ourselves every day bake up who we are and how we think. So I think getting a bit more intentional about our inputs and our outputs will help us shape who we are and how we think by default.
ERIN: You’ve written that you want your grandchildren to read about Alzheimer’s the way we read about polio. How do you feel about where we are and where we’re going?
MARTY: Well, I want to give credit where credit is due. I did not come up with that saying. It’s one of the cousins from the infamous photo of the Reiswig clan. It was his concept and I stole it, and I love it, because I do want the world to read about Alzheimer’s disease in textbooks.
That reminds me, your question reminded me of something I wrote back in 2021. It was after I found my genetic status, but before we really knew that these drugs were going to be effective. I said:
“I will conquer Alzheimer’s. In this life or in eternity, I will conquer Alzheimer’s. I will do so by making the most of the time I get, whether I get sick or not. I will also do everything I can to cure Alzheimer’s for myself, my kids, and for everyone, truly conquering and eradicating it.”
I can’t believe that that’s really coming true. I think that we are really on the cusp. I’ve been able to have conversations with heads of pharmaceutical companies. I’ve been a panelist in front of these drug companies that are currently producing Leqembi and Kisunla, and even they are looking at what does this look like, to bring an Alzheimer’s treatment to the public that is pre-symptomatic, so that we can delay symptom onset for years if not indefinitely.
And it’s a fascinating thing that has been done before. The really great example is with cholesterol and statins. If you can detect cholesterol before the heart attack symptoms, even just by your primary care physician, you can then be given this drug. And so the revelation was statins. And so now we can apply a drug and we can stave off heart attacks and hypertension, and we can live managing this illness or this problem.
It took decades and it took a lot of public awareness, public education, PCP education. It took a lot of different drug companies coming out with different versions. But gradually, this innovation was disseminated out to the public, and the public eventually just accepted it, and also took away the stigma. Right? And that’s one of the reasons, I want to go all the way back really quickly, that we talk about it with our kids: to remove the stigma, to let us talk about this. Because as long as it has a stigma, it gives it power, and you take away that power by talking about it.
So Alzheimer’s disease and dementia can be similar and can follow possibly the same kind of timeline and path as other drugs and treatments have. And so I think we are actually, now that we have these blood tests that can do early detection, then we can take these drugs and do early application in order for early and possibly extended prevention. And so I’m now on sort of this campaign to make beta amyloid the culprit, just like cholesterol was the culprit for heart attacks. We need the public to start understanding that beta amyloid is the culprit, is the bad guy, and these drugs applied as early as possible, even before symptoms, can help. And that’s what the drug study that I’m in, called the amyloid removal trial, the ART study, is trying to prove: that we can delay symptom onset.
It is indescribable how hopeful I am. I’m full of hope that I think is really backed by science. That’s why the amyloid removal trial exists. It’s why the gantenerumab open label extension exists, because these incredible pharmaceutical companies have spent literal billions of dollars on trying to treat Alzheimer’s disease, and they finally came up with something that works effectively to remove beta amyloid from the brain in a safe and relatively healthy way, where the side effects can even be healed from. So we can now put a lot of hope into the science that is progressing really quickly now.
Okay, if I had to predict, and I’m no expert in this field, so bear with me, but if I had to predict, I would say that we are five years-ish, give or take two on either side, three to seven years, from having a pre-symptomatic Alzheimer’s drug approved by the FDA. And that will be a game changer.
Now, how that impacts insurance companies and whether they’re willing to cover it, how that impacts employment and employment law, because it’s one thing to tell your employer that you have some heart trouble. Right. But if you mention to your employer that, yeah, I might have Alzheimer’s disease, and they’re like, you might be cognitively impacted, now I might be looking for an excuse to let you go. A different one, for performance. Right.
[Editor’s Note: GINA stands for the Genetic Information Nondiscrimination Act, the 2008 US law which makes it illegal to discriminate against employees because of genetic information and prohibits health insurers from using a person’s genetic information to determine eligibility or premiums. Learn more about the GINA act.]
So there’s so many ramifications, insurance, employment, all of it, that we will have to navigate through as a society, as a world. But that is a fun problem to deal with versus we’re losing grandma and grandpa way too early, and we’re losing their memories and their experience. And mom and dad are valuable to me and valuable to society.
And yeah, I’m just loving the situation we’re in as compared to 10 years ago, when there wasn’t really any hope. We were studying the disease, but nobody had really made any major progress, especially 15 years ago when we started all this. We just know so much more now, and these drugs are so effective, and they’re only going to get better. So I have a ton of hope for the future, both semi near term and long term. I don’t even worry about it for my kids. By the time they are 45, I think this will be very, very treatable.
ERIN: Our community’s participation and advocacy are a big part of why we are here. Thank you for the years you’ve given to it.
MARTY: You’re welcome. I did it for me. I did it for my kids. I did it for you. And I did it for the general public. I really believe that our community holds the keys to unlocking Alzheimer’s disease treatment and prevention for the world. And that’s proving out. Our studies have been extremely valuable for the development of drugs, and now to early detection with a simple blood draw. And that’s absolutely incredible.
So huge kudos to Dr. Bateman. He was the one who first thought of this idea of getting a dominantly inherited Alzheimer’s network together from around the world, because you couldn’t study enough participants in just one site, let alone one country. And so he pulled together pharmaceutical, the Alzheimer’s Association, and others to form a consortium to fund a worldwide study, so that every site could only have maybe a half a dozen people to 20 some people, but coordinate all that information and those studies to have the same protocols in order to get us to where we are. And then on top of that, he took his knowledge and expertise, and I believe he was even an electrical engineer prior to becoming a neuroscientist, and he and partners created the C2N Diagnostics company, and they built the actual machines that can spin this blood this way and determine beta amyloid load. So he’s wicked smart, wicked helpful, and I hope he wins the Nobel Prize someday.
And if you ask anybody in the research field of Alzheimer’s disease over the last 10 years, who have you been paying attention to the most, it is the answer across the field has been Dr. Bateman, and the DIAN study is leading the way. Absolutely. Except for the people who are beta amyloid hypothesis deniers. But everybody who’s still on the beta amyloid hypothesis bandwagon would say we’re leading the charge, and we’re getting better information out of this tiny community than we’ve ever gotten before. And it’s just so much credit goes to Dr. Bateman and all of his colleagues across the globe and at WashU St. Louis. Without them, we would still be 10 years or 15 years ago.
ERIN: Thank you, Marty. Every time I get the chance to listen to you, I take away something inspiring.
MARTY: Yeah, you’re welcome. And I do want to offer individual conversations with me. Feel free to reach out through the Youngtimers website or whatever. Happy to just get on a phone call with anybody watching the video who has other questions, or wants to argue with me about my take on this or that. Happy to have healthy debate, and to offer just a friend. Fifteen years ago, I could sure use a friend who was ahead of me in this journey, to just bounce things off of now and then, and I find it incredibly fulfilling and enjoyable to do the same for people now. So it’s not a bother at all, and I would love to do that for anybody who needs it.
Resources mentioned in this conversation
Dominantly Inherited Alzheimer Network (DIAN) ⧉ - The international observational study Marty, his brother, and his father joined, coordinated through WashU St. Louis
DIAN clinical trials ⧉ - The trials arm of DIAN, including the gantenerumab open label extension and the amyloid removal trial (ART) Marty describes
The Thousand Mile Stare ⧉ - Gary Reiswig’s account of his family’s experience with familial Alzheimer’s disease and the science that grew from it