Book and lindsay will be speaking today, as well, about some of the experiences that her family and she personally has gone through alzheimers disease. When i think back to the first time i met members of the demo family in 2009 it really feels like im reviewing the notes that i took on someone elses life. We did not know each other and i didnt know about oldtimers disease or how lethal it is and i was just a journalist who was on an assignment in pittsburgh and i went into their hotel room spend a couple of hours interviewing them and when i came out it was like i had gone through the Looking Glass and i was completely blown away by their story and what they were going through and i was never going to be the same which is why i decided to write a book about them. I learned from them quite a few lessons that i like to share with you today and hope that it will shed light on where we are with this epidemic and thats what it is, a Public Health epidemic. I think its the Public Health epidemic of her time even though we dont think of it or talk but also was disease that way. Several members of the family are from north dakota, as i mentioned, several are from wisconsin and there are some in colorado, oklahoma, wyoming so they are spread all over. For those who are familiar with the book the facts of their mutation are pretty sobering. People in the family who carry this mutation developed all summers in their 40s and typically they pass away sometime in their 20s and if you have the mutation you have a 50 chance of handing it off to your children and of the six siblings of the main focus of my book most of them were already parents at the time they learned this news in 2004. There are only a few hundred people that this mutation and as you might imagine their extremely valuable Research Subjects because theyre guaranteed to get the disease scientists have been able to watch the biological progression of all servers in real time by scanning their brains and correlating those images against traditional cognitive tests and so for this reason and because of their willingness to be researched test subjects we are now at a point in where were understanding so that made her story a doubleedged sword. It was a credibly tragic but at the same time it was extremely inspiring. One of the lessons i learned from the family is that heroes often appear in most ordinary packaging. This is a family that is Middle America is anyone you have ever met. They are teachers and oil workers and in lindsays case, physical therapist, an architect, a hairdresser, you know, you name it they are part of society. They dont look like superheroes but what sets them apart in my mind as they did when they were handed this extraordinarily piece of bad luck. They made a delight collective decision as a family they would fight back and to give you an idea of what they were up against what they were fighting back was a disease that has been around for as long as human beings have been around in science has known about it since 1906, so more than a century, and hasnt done a thing about it. Theyve not been able to solve it. It is a medical mystery. When they were diagnosed in 2004 they really did not know who is going to help them fight back when they made this decision because Alzheimers Research is still relatively new and most of what we been able to do with this disease has occurred within the last ten or 15 years. For them it was like walking into battle against the monster you cant see and your blindfolded and are holding a stick and i dont know who will help me with this but i will fight and if im gonna fight or go down to die, im going to go down fighting. That courage resonates. Even if your monster is not alzheimers, we all have our own battles and in those moments you feel like youre back up against the wall you can relate to what the devils were up against. I think of aunt laurie, lindsays aunt laurie, who traveled to research for every year until the point where she entered a nursing home and she 57. She was a fiercely independent funny, capable woman and when i met her in 2009 you would not have known that she had alzheimers. One of the things that a lot of people dont know about oldtimers is this. When a persons symptoms begin to roll and show up more prominently, travel makes them worse so you have difficulty reorienting yourself when you return home and every year that lori came to third for research it was shortening the time that she had left with her three daughters and granddaughters and husband and she knew that. She was giving up a time and she did it anyway. I asked her why and she said because this is my salvation. She did it because she wanted to save her daughters and she wanted to save my sons and she wanted to save your daughters in your sons. She knew that what she was doing was not going to help her because the science wasnt there yet in which he couldnt fight anymore she donated her amazing Brain Research for further study. I think about dean who is with his father when he was had the disease it was announced that he was going to live his life as well as he could for as long as he could and instead of telling of this tragic occurrence in his family he decided to focus on what he could control and everything he had that he was grateful for. So he takes a road trip to the sun and he danced at lindsays wedding and he traveled to australia with his lifelong best friend and with dolphins and last year he went to toronto in the summer he went to england to address International Conference for the Alzheimers Association to bring attention to this disease. This past spring dean. His closest sibling who is his brother, doug, doug was 19, 19 months older than dean and on the same day after that funeral when he served as a pallbearer that actual same day he asked me to stay with him as a nurse injected him with an experimental drug that his older siblings were too late to get. I think about their sister, carla who did not inherit the gene and there was a time when carlo was a homecoming queen and a cheerleader and easily intimidated into a discussion itself is a ditz but all that changed when her siblings were diagnosed. She devoted the rest of her life to Alzheimers Research and shes the one that steered her siblings into the studies and she was the person i reached out to the idea of a book so without her wouldnt know anything im telling you and science would not have been able to save the family or the disease with such great detail. The second lesson i learned from writing this book is that in order to succeed you fail. I met a lot of brilliant doctors in the course of this research and the funny thing about that was how unassuming they all were. They really did not 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 their so back in preferred there was a doctor named bill and hes been working there since 1987 and he studies alzheimers disease. Much his entire career and in 1994 he decided that he would take on the holy grail and he would figure out a way to look at alzheimers in a living brain. He spent several years attempting this endeavor and failing repeatedly. The only project he was working on for all those years trying and feeling and a lot of his colleagues recognize how important it was to look at all servers and living brain was quietly on the sidelines watching him they werent able to do it themselves because it was dangerous for their careers and it would be easy to lose your job that way. But it was important and it was important because up until then the only way we can look at alzheimers disease was onsite under a microscope under a person has already died so you dont really know too much about how the disease has been progressing biologically and is one of the reasons why we werent able to make much progress in solving it. So doctor had a breakthrough in on valentines day 2002 he was able to use a radio tracer that he developed in a living person. You get an injection and they do a scan of your brain and it lights up and the signatures of alzheimers disease and he can look up developing 15 years before your symptoms ever occur, 20 years before they occur and it was a game changer in alzheimers and it happened because he was willing to fail. I think also of doctor francisco who was a doctor from midian, columbia and when he was young man, early in his practice, he stumbled across another family who had the same genetic mutation as the demoe family and the family is really large and he spent years studying them and he often visited them by horseback through dangerous territory and he was kidnapped more than once and so were members of his team and they kept their Patient Samples cold in the river to preserve them. He worked in obscurity for many years trying unsuccessfully to get anyone to Pay Attention to what he found but once the doctor developed this radio tracer to look at alzheimers in a living brain pharmaceutical Companies Began to target the underlying biology and the doctors work became very valuable because the colombian family like the demoe family offered perfect Research Subjects that if youre guaranteed to get the disease you can be tested in euro find out that youre going to get it they can start looking at your brain when youre in your 20s and watch as the disease unfolds and target the disease with experimental drugs designed to prevent it. Today the two families are a part of a large well, its not large because it deals with a small publishing for each part of two different drug trials that run parallel to each other testing drugs that test and those in charge of your notes compare practices and they been able to bring the population in the science together. With that i would like to take a break for a minute and introduce lindsay who can explain a little bit about her personal experience this disease and what its been like for her. Lindsays generation is actually in a unique position because now that they know, unlike their parents, that this is a mutation that is stocking the family tree the decisions for this generation are very different and i will let her speak to that. I want to thank you all for being here supporting this book and having interest in the story it in my family. Its very encouraging and it so important for the advancement of finding a cure for alzheimers disease. As nikki said my father is dean demoe and he has a gene for early onset all timers. I have the chance of developing alzheimers in my 40s or 50s. Im 31, married, and work as a physical therapist in minnesota. I also have younger brother is 28 and a younger sister who is 21 and they equally have that chance for alzheimers disease. My brother and i have been tested as part of the Research Study 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 alzheimers disease . I think i see people nodding their heads and you had that thought for but most people dont start to think that way until theyre in their 50s, 60s, 70s. Ive been thinking that since my 20s so theres a little bit of a difference at that. I was a sophomore in college when my dad tested positive for the gene and our entire family was really certain that he did not have the gene. He and his two older brothers had tested positive for the gene already and he and his older sister, carla, or the process of becoming their power of attorney so he did it more as a formality just to make sure that he was negative to be their best power of attorney. So it was a shock to find out that he was positive and a greater shock we found out that five of the six siblings had the gene. When we found out the results but even the thought of being 40 seemed like a lifetime away. By wasnt showing symptoms at the time and after i went through the initial shock i really didnt think very much about it. I was busy with college and i went on to grad school and during school i was working twothree parttime jobs and didnt have time to think about it and i didnt for a while. After i finished grad school i decided i was ready to address the fact that i have the gene and what i could do about it. I enrolled in the network for the observational study as soon as i finished grad school and i went to my first study that i was taking my boards and right before starting my job as a physical therapist and once i found out the results of my boards and those were positive results but i passed that was great but at this first visit it was where they drew the blood to test my genetic status. At that time i was not sure i wanted those results. Before i left for that visit i did speak with my dad and asked him about his decision to find out and i asked him if knowing what he knows now does he regret finding out. He told me then that he did regret finding out his status because he, too, so sure that it would be negative. So after a lot of thought and consideration i absolutely do not want to know and theres still hope that it would be a negative result and i could be at peace with that. Now, a few years later, my thoughts changed day today on whether i want to know and 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 that is hanging over your head like a dark cloud. It never really goes away so there are some days when i can go weeks without thinking about it but then there can be days when that is all you think about. You can go back and forth and i am very much planner by nature and so a lot of times the uncertainty messes with my personality a little bit. So there are a lot of things i think about when it comes to finding out my genetic status and for me the main thing was how it would affect else in my life. I feel like im in a place mentally where the results are positive or negative i feel like im there to handle it and that i would be okay. What stop me from finding out is how it will affect those around me. My husband, my siblings, my parents, my friends, finding out doesnt just affect me but all of them as well. My husband is incredibly supportive and he will stand by my decision whether i decide to find out or not and for my siblings i dont necessarily want my decision to affect their decision. So being the older sibling they look at me as a role model and at times follow my path and i dont want to be influencing their decision because its a very personal decision and whether to find out if you have the gene or not and its one that has to be done thoughtfully and independently of everyone else. When it comes to my parents my hesitation there is im not sure if they would be able to handle the guilt if it was a positive result. 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, if were to come back negative it could save a lot of worrying and what if for myself and my family. The other thing i think about when i debate whether i want to know not is that if i do have alzheimers disease my good years will be limited. I would want to make the most of those years. My dad age of onset is 48 years old so theoretically that would be my age of onset, as well. In the last 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 im a planner and i have to do everything this way and you pay off your bills faster so you get that debt paid down. Instead im trying to find a balance of being financially responsible for the taking time for trips or events that normally i wouldve said no to because it cost too much money. Whether or not i decide to find out my status i have decided im going to try to adopt more of a philosophy of living life to the fullest one trying to take time to make memories with the people i care about is that is what is important no matter what that test says. Im very thankful for the amazing support system that i have with my family and friends and my dad and his 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 diagnosis and have risen to the challenge participating in research, countless mris, drug infusions, cognitive tests, lumbar punctures and many, many other things all to help her children very well knowing it will not help them. It was not a hard decision for me to start the research because they led the way for us all and because of their sacrifices there will be a cure for alzheimers and there will always be hope for the future. Thank you. [applause] thank you, lindsay. At this point it might be asking the question the thing i ask myself when i first started it alzheimers is so widespread why am i just hearing about it now. Alzheimers disease was first discovered in 1906 and by the way, the person in it was discovered had the same genetic mutation as the demoe family and she was 56 years old when she died. For the next 60 years after the Discovery Science essentially ignored the disease and they thought it was a rare affliction and different from what we call senility in older people. That allowed alzheimers to continue unchecked and there was really no Research Funding associated with it. In the mid 1960s a study proved that senility is actually in most cases alzheimers and that its a disease impacting millions of people but still the Scientific Community and the public really did not give it a lot of thought because when we think of a disease as affecting mostly oral people we do pay less attention. In 1976 the california neurologist wrote an editorial for the American Medical Association which referred to alzheimers is a major killer and it was this editorial they gave birth to the Alzheimers Association and started building some support for research but probably the two biggest factors that led to beginning to recognize the severity of this epidemic were people were living longer and according to the Social Security administration a man can expect to live on average 83point years old and a woman can expect t