Looks at the jeanette ticks behind alzheimers disease. Thank you for coming today. My name is nick sam sam bliss and i wrote a book about a family centered in north dakota that cares a vary genetic mutation that guarantees alzheimers disease, and i really pleased to say that with me today is lindsey, white house father, dean, was a central figure my book and she will speak today as well about some of the experiences hat their family and she personally have again through with alzheimers disease. When i think back to the first time i met members of the family in 2009 it really feels like im reviewing the notes i took on someone elses life. And spent a couple of hours interviewing them. And when i came out it was like i had gone through the looking glass. I was completely blown away by their story and what they were going through. And for me i was never going to be the same. Whichan is why i i decide to wa book about them. I learn from them quite a few lessons that id like to share with you today in hopes it will shed some light on where we are with this epidemic, and thats what it is, as a Public Health epidemic. I think its the Public Health epidemic of our time, even though we dont think of it or talk abouti alzheimers disease that way. Several members of the family are from north dakota as i mentioned. Several are from wisconsin. Theres something colorado, in oklahoma, wyoming. So they are spread all over. And for those of you who are not familiar with thepr book, the facts of the mutation are pretty sobering. People in the cemetery this mutation develop alzheimers symptoms in their 40s. And typically the past away sometime in the 50s. If you have the vacation you have a a 50 chance of handing t off to your children. And of the six siblings that was main focus of my book, most of them were all repairs of the time they learned this news in 2004. So there only a few hundred people in the world with this mutation, and as you might imagine they are extremely fallible research subjects. Because theyre guaranteed to get the disease, sizes available to watch the biological progression of alzheimers in realtime by scanning the brains and then call relating those images against traditional cognitive tests. And so for this reason and because of their willingness to be researched test subjects we are not at a point in history where we understand alzheimers that family have since it was discovered. So that made the story a doubleedged sword. It was incredibly tragic but at the same time it was extremely inspiring. One of the lessons that i learned from the salmon is that heroes often appeared in the most ordinary packaging. This is a family that is as Middle America is anyone youve ever met. They are teachers, oil workers. In clintons case, the physical therapist, an architect lindsay these case. An architect, a hairdresser, you name it, they are part of society. And they dont look like superheroes but what sets them apart in my mind is what they did when they were handed this extraordinary piece of bad luck. They made this collective decision as a film center theyre going to fight back. And to give an idea of what theyre up against, what they fighting back was a disease thats been around probably for as long as human beings have been around. An site is known about it since 1906, so more than a century, and hasnt done a think about it. Has not been able to solve it. Its a medical mystery. And when they were diagnosed in 2004 they really didnt know who is going to help them fight back when the maid this decision. Because Alzheimers Research is the relatively new. Most of what weve been able to do with this disease has occurred within the last ten to 15 years. For then it was like walking into battle against a monster you cant see, and youre blindfolded, and youre holding a stick and you say i dont really know whos going to helping with this but im going to fight. If i go down on going to go down fighting. For me that kind of courage really resonates because even if your monster isnt alzheimers i think weve all had our own battles, we share some of them, we dont sure others. In those moments when you feel like your back is up against the wall you can relate to what they were upte against. I think of menzies and lori who travel to pittsburgh for research every year until the point where she entered a a nursing home she was 57. She was a fiercely independent, funny, capable woman and when i met her in 2009 you probably would not know that she had alzheimers. One of the things a lot of people dont know aboutim alzheimers is this. When symptoms begin to start to roll and shut more prominently, travel makes them worse. So you have difficulty reorienting yourself when you return home. Every year that lori came toe. Pittsburgh for research, it was shortening the time that she had left with the three daughterss and her granddaughter and her husband. And she knew that. She was giving at that time, and she did it anyway. I asked her why, she said because this is my salvation. She did it because she wanted to see her daughters and she wanted to save my sense and she want to save your daughters and sons. You know, she knew that what she was doing was not going to help her. The site wasnt there yet. When she couldnt fight anymore she donated her amazing brain to research foror further study. And i think about dean who is lindseys father. When he found out he had the disease, he announced his going to live his life as well as a good front long as he could, and instead of dwelling on this tragic occurrence in his family, he decided focus on what he held control and everything had that he was grateful for. So he takes road trips with his son and he danced at lindseys wedding and to travel to australia with his lifelong best friend, and he swam with dolphins. Last year he went to toronto and this past summer he went to england to address International Conference for the Alzheimers Association to bring attention to this disease. This past spring dean buried his closest sibling who is his brother doug. Doug was 19 months older than being, and on the same day after that funeral, when he served as a pallbearer at actual same day he asked me to sit with him as a nurse injected him an experimental drug that is older siblings were too late to get. I think about their sister karla who did not inherit the gene, and theres a time when karla was a homecoming queen and the cheerleader and easily intimidated and she would describe yourself as a ditz. All that changed when her siblings were diagnosed. She devoted the rest of her life to Alzheimers Research. Shes the one that steered her siblings intoli the studies. And she was a person that it reached out to, the id of the book. So without her you would know anything that im telling you, and science would not even able to study the family of this disease than such great detail. The second lesson that i learned from writing this book is that in order to succeed, you have to fail. I met a lot of brilliant doctors in the course of this research, and the funny thing about them was how im assuming they all were if they really didnt care about letting you know how important they were. They didnt really care about credit or in many cases even compensation. What they cared about was science, and what they care about is finding that cure. This isnt a glamorous field, and academia is not a place where anybody goes to get rich. But you do still have to produce in order to survive there. So back in pittsburgh there was a doctor named bill and hes been working there since 1987 and the estate alzheimersin Disease Burden much his entire career. In 1994, he decided he is going to take on the holy grail pick is going to figure out a way to look at alzheimers in a living brain. He spent several years failing creepily. The only project hes working on for all those years trying and failing and a lot of his colleagues recognize how important it was to be able to look at alzheimers in a living brain were kind of quietly on the sidelines watching them but there were not willing to do it themselves because it was very dangerous for their careers. It would be easy to loset your job that way. But it was important. It was important because up until then the only way that we could look at alzheimers disease was on slide under microscope after a person is already died. So you dont really know too much about how the disease has been progressing biologically, and thats one of the reasons why we were notw able to make much progress in solving it. So dr. Klunk had a breakthrough, and on valentines day 2002 he was able to use radio tracer that he developed in a living person. You get an ejection. They do a scanng of your brain d lights up. It happened because he is willing to fail. I think also another doctor, ang doctor from columbia, when he was a young man early in his practice he stumbled across another family who had the same genetic mutation as the demoes and this family is really large. He spent years studying the. He visited them by horseback through dangerous territory and jews kidnapped more than once and so were members of his team and they kept the Patient Samples cold in the river to preserve the. He worked in obscurity many years trying unsuccessfully to get anybody to Pay Attention to what he found. But once dr. Klunk developed his radio tracer, pharmaceutical Companies Began to develop drugs to target the underlying biology of alzheimers disease. And the doctors were taken very valuable because the colombian family offered Perfect Research subject that you are guaranteed to get the disease and can be tested in utero and find out youre going to get it. They can startas looking at your brain when youre in your 20s and watch as the disease unfolds and target that disease with experimental drugs designed to prevent it. So today the colombian family and the demoe family are part of a large, its not large because of two small population but there theyre each part ofo different drug tiles that run parallel to each other testing drugs it target and alloyed and the researchers were in charge of the studies are comparing notes and best practices. So theyve been able to bring the population and thed, science together. En with that id like to take a break for him and introduce lindsey who can explain a little bit about her personal experience with this disease and what its been like for her. Wednesdays generation is actually in the unique position because now that they know unlike their parents that this s a mutation thats kind of stocking their family tree, the decisions for this generation are very different and ith will let her speak to that. Just want to thank you all for being here today and supporting this book and having interests in the store and also in my family. Its very encouraging and its so important for the advancement of finding a cure for alzheimers disease. As niki said my father is dean demoe and is a gene for early onset alzheimer diseasehe of ths means either a 50 chance of developing alzheimers in my 40s or 50s. I am 31, married and and work as a physical therapist in minnesota also have a younger brother younger brother. Hes 28, and a younger sister was 21, and the equally have that 50 chance for alzheimers disease. My brother and i have been tested as part of the research study, but we have chosen not to know our results at this time. Most days i would say im perfectly content with not knowing what that status is because there is no treatment for alzheimers disease. Other days if i have trouble finding the right words or cant remember where i put my car keys, i have a little bit of panic and think, oh, is this alzheimersin disease . I think i see a lot of people nodding their heads. Youve had that thought before, but most people dont start to think that way until they are in their 50s,e 60s, 70s. I have been thinking that since my 20s. So theres a little bit of a difference at that point. I was a sophomore in college when my dad tested positive fori the gene. Our entire family was really certain that he did not have the gene. So his two older brothers had tested positive for the gene already, and he and his older sister, karla, when the process of becoming their power of attorney. So he did it more as a formality just make sure he was negative to be theiroc best power of attorney. So it is really a shock to find out that he was positive, and eventually a a greater shock wn we found out that five of the six siblings had the gene. When we found out the results, i was only 19. Even the thought of being 40 seemed like a lifetime away. My dad wasnt showing any symptoms at the time, and after i was through the initial shock, really i didnt think very much about it. I was busy with college. I didnt went on to grad school, and during school i was working two to three different parttime jobs over just enough time to think about it. I didnt for a while. After i finish grad school so i decided i was ready to kind of address my chances having alzheimers disease, and what can i do about it now. So i enrolled in the dahmer inherited alzheimers network, or diane, observational study as soon as i finish grad school. And i went to my first study right after i finished taking my boards and right before starting i first job as a physical therapist here what at this i found out the results of my boards board and those were positive results that ask him so that was great. But at this first visit is worthy to the blood to test my genetic status. And at the time i was not sure that wanted those results. Before i left for that visit i did speak with my dad, and asked him about his decision to find out his steps and i asked him does he regret finding out. He told me then that he did regret find out his status because he, too, was so sure that it was going to be negative. So after a lot of thought and consideration i decided that actually did not want to know and that there was still hope that it would be a negative result. And i could be at peace with that. So now a few years later my thoughts kind of change day today on whether i want to know if some days i still actually do not want to know, and other days i feel like i do want to know because it is something thats always hang over you like a dark cloud. It never really goes away. So theres some days where i can go, i can go weeks without thinking about it, then there can be days when thats all you think about. So you have to go, you kind go back and forth but i very much a planner by nature, and so a lot of times this uncertainty kind of throws, messes with my personality and little bit. So there are a lot of things i think about when it comes to finding out my genetic status. For me the main thing is how its going to affect everybody else in my life. I feel like i am in a place mentally where, whether the results are positive or negative, i feel like im prepared to handle it and i would be okay. What stops me from finding out is how its going to affect those around me. So my husband, my siblings, my parents, my friends. Finding out just doesnt affect me. It affects all of them as well. My husband is incredibly supportive, and he will stand by my decision whether i i decideo find out or not. And for my siblings i dont necessarily want my decision to affect their decision. So being the older sibling, a ty look at me as a role model, andn at times although my path. And i dont want to be influencing their decision. Its a very, very personal decision, whether to find out you have this gene or not, and its one that has to be done thoughtfully and kind independently of everybody else. When it comes to my parents, my hesitation is im not sure if they would be able to handle the guilt if it was a positive result. And my dad has specifically said in other interviews that he doesnt want us to find out our status because he doesnt want to know. But on the other hand, it over to come back negative it could save a lot of worrying and what this for myself and for my family. The other thing i think about when activating is if i do have alzheimers disease, i could use are going to be limited so i would want m to make the most of those years. My dad stated onset was 40 years old, so theoretically that would be my onset as well. And the couple of years i have tried to worry less about saving money and paying down my student loan debt, which was really hard for me to do because i a planner and have to do everything this way, and you pay off your bills faster so you get that debt paid down. So instead i been trying to find a balance of being financially responsible, but then taking time for trips or events that note i wouldve said no to because they cost too much money. So whether or not i decide to find out my status, i have decided im going to try to adopt more of the philosophy of living life to the fullest and taking that time to make memories with the people that i care about. Because thats whats important no matter what that test says. So im very, very thankful for the amazing support system that have with my family and my dad and his my siblings have been amazing role models for not only myself but my siblings, my cousins as well. They were given what seemed like a hopeless diagnoses and have risen to the challenge, participating in research, drug infusions, cognitive tests, ands many, many other things, all to help their children. Very well knowing but its not what you tell them. So is not a hard decision for me to start the research because theyd lead the way for us all. And because of their sacrifices, there will be a cure for alzheimers and will always be hope for the future. Thank you. [applause] thanks, lindsey. At this point you might be asking yourself a question that it actually asked myself when i first started. If alzheimers is so widespread, why am i just hearing about it now . So alzheimers disease was first discovered in 1906, and by the way, the person in whom it was discovered at the same genetic mutation as the demoe ham and she was 56 when she died. For the next six years after the discovery, science essentially ignored the disease. They thought it was a rare affliction and different from what we called senility in older people. So that allowed alzheimers to continue unchecked and was really no Research Funding associated withff it. In the mid1960s a study proved that senility is actually in most cases alzheimers, and that its a disease impacting millionsin of people. But still the Scientific Community and the public really didnt give it a whole lot of thought. Because the reality is when you think of a disease as affecting mostly older people, we do pay less attention. In 1976 a california neurologist wrote an editorial for the American Medical Association that refer to alzheimers asur a major killer. It was this editorially gave birth to theme Alzheimers Association, and started building some support for research but probably the two that l