the united states today how old timers and it actually are country six leading cause of death which is not something that you many people know  that matters to a lot of people and with strangers that we still don't really know the average person very much about which is one of the reasons why and the other reason why that they were positive for this in fact all of these six siblings the only one they didn't have is carla we've known about it for more than a hundred years and it's probably been around for thousands of years so there are very good reasons to be afraid but there's also a valid hope and that brings me to this family a is still in high school and as part of their decision to fight the disease that's the most became connected with the all fires disease research center at the university of pittsburgh one by one each of them would eventually  for close to a hundred years the only way that we could see those plaques and tangles and definitively say that somebody has one of the ways by looking at slides in their brain and going on as you can imagine that's actually not family knows which family members based on your genetic tests it will get all farmers doctors to look at their brains with the first one and see what's occurring there and what symptoms are associated with which species of biology in their brain and recently science has also developed a way to look at how protein that's a more recent technology so this promise the better part of the treatment previously some of the drugs that were being used that are currently being used in this trial were used in people that already had them and they didn't work probably because they were given too late or at least that's what i think so if they give them to somebody before they have symptoms then you stop you from ever getting offers the only way to really test that out is to have people that you know are going to get off or don't have it yet and a good mother the morning noon and she did the trial that they were going to she wasn't actually eligible for the drug trials they were just looking in the biology of her brain in one of the things that people don't really understand about all under suspicion is that when they travel they get very disoriented when they get back home so actually every time she came to pester she was shortening the amount of time she had left with her family but she did it february twenty sixth and her daughter's school with her when that happened her contribution the contribution of her brother right here passed away and money and then the contributions of her brother dean here successful in fighting this disease you i am hearing from are a annual check up at the university of pittsburgh where i spend the next three days going through what a series of research in the end of her writing about the single most important thing she could do want justin to come out and be able to tell you a little bit about caregiver i was not able to be very hands on caregiver with my mother and i feel like we all have different roles from that definitely took the role on more as she moved from denver to a willing to take care of her before we went into a home caregiving is a very very very important role and i don't know if you have there's a body here of the manager there's at least a few that's probably harder than dealing with  disease yourself so if there are any caregivers out there i do want you to know that you are not alone in that there is help for you and one of those this is kind of   big advocate for for the health care association anything that you or reports as well as thank goodness we have somebody that finally addressed the issue and and wrote a book about you know about a five years from now that was a moon shot the doctors that are doing this or that that's what it was kind of like the demo is they said we don't know how we're going to get there we don't know who's going to help us disease what are we doing about it these guys they're fighting we don't need to be doing more to give you some perspective on where all tires fit in general science funding in two thousand fifteen the u s government spends five point four billion dollars on cancer research one point two billion dollars on part of the three billion dollars on each are unique and that's money well spent because is leading to research that's going to move the needle on all of the i absolutely believe that the funding needs to be there we need to have more researchers doing this work and we need to come together as a this research as well as doctors who are research people in the general population that will be called the radical to see how all of those diseases resemble each other and how the drug you can contact your research centers that's just the university of pittsburgh question it has to be you have to be part of the study to have that and most people don't qualify for that there is a very good reason by the way to bring up an excellent point why can't all of us just don't get all funding because there isn't a treatment for it so doctor do not want to give you that information we don't have you know something that you can do about know what they have the best answer to then i think is comparing it to something like cancer we know that there are many causes of cancer you can get a genetic predisposition for cancer there are environmental causes for when you have also her is deceased basically your grief again out of work versus ok so you start getting out to the point where you can no longer walk because your brain forget how to make the rest of your body walk you can no longer swallow because your brain forget to swallow so you can essentially starve to death but then also because you're bedridden you may have some diseases that are associated with that  medic nations that were being given to her to keep her calm she had kind of gotten to the combative aggressive very heated state and the medications they were giving her were being and if i may just got to a point where the facility she was insult like they couldn't properly care for her anymore she went into sort of a and loss but we also kind of feel like she chose that and gotten to a point that she didn't want to be there anymore and sort of checked out and was able to  a lot of the and face of this as the disease which for many people leaves them bedridden and unable to be with just our grandfather passed away however humans in that state for years and years typically not unless you were research and they typically don't you bring in a way to diagnose you know that's something that's still only available in a research study because it's expensive and because there's nothing they can do for you so you and i can't really go and get a brain in your family it's growing in our grade i don't want you to go to your family doctor and just so because it keeps coming up a little bit our family started putting together which is in the book a lot of family history to get to the point we are now so it was years about or our mom and her siblings thinking that what they had gone through with their father was over they didn't think it was going to affect them now all of a sudden some of the siblings are missed showing similar symptoms to our grandfather and his mother and we started putting the pieces together and talking to a lot of people and so really it was having a really a number of things a leech the ability hardening of the arteries some of you probably heard the term it was also received so that was actually realized to be the same disease in nine hundred sixty eight and still  documents he had most of those things put together what for she even found out her genetic status simply because it was already happening in a lot of the other siblings and it was run as fast things you no room for argument or we're just not knowing what we needed to do because she had waited our hours and we were just simply able to follow her to her wishes well i think i'm speaking off the cuff here i think p c p s are increasingly very aware have to struggle especially if they work with a lot of older people they're trained to look for it situation yes i think mentioned earlier honestly i changed everything in my life just to be completely honest i changed careers and five year relationship i moved home to help take care of my mom started a new relationship started a new jock and then i also started the drug trial so this is actually a current thread of research it that people who have down syndrome if they live long enough more likely than not develop alzheimer's disease that i or there are many many causes all farmers we believe again this is an area of research that still fairly new funding is what drives what we know about any disease you're seeing with the funny picture looks like it's interesting that you bring up head trauma so head trauma oh you know if you suddenly started hearing a lot about the question what causes athletes for example to develop dementia and i said earlier to bench it kind of a catchall phrase argument because you are probably you don't understand them all that well yet one of the doctors who works with the colombian population that i mentioned earlier told me when i interviewed him we know more about the outer reaches of space that we know about our own yes those numbers don't lie every day ten thousand more people turn sixty five every five years their future in sixty five your risk is doubling so you have as we live longer are going your insurance carrier why is that important well ok so devotedly knew in two thousand and four it had something going on in their family tree and it geneticists told each one of you to fifty fifty father had the foresight to get her a bunch of care insurance as just in case ok that ended up dating him financially when it turned out that she did happen to these but she had to wait for two years now why is that important there dad just told me last week that company no longer outers that option i'm talking too much money so it was being operated by it and they know that she had all fighters she normally yes i think you would be able to because it's not part of the medical records in this very area with talk about talk before about the silence and the stigma surrounding all fires his question points to an obvious special sections of the room just to make sure there was no chance there was going to be they were going to be on camera there was a young woman which travelled across half of the country around because her family doesn't believe there's anything they can do about it  will all be unemployed if that's the case look at the numbers it has to change and we hear the ones that have to insist that it changes that's why i will say this i was at the same conference that rotten one hundred to three hots talk to anybody basically except for this family but i was there under his or people were asking them because the book and come out again this was last july they said they're going to actually use she's going to use your real name there she's going to use your real but we're not doing it it has to be done this way for that reason and then have the courage to do it and i think the how is she now she is thirty one and the only reason she is doing that is because she is expecting a baby in the day was focusing on her career she's an emergency room nurse ok all right so that was one of the curiosities but i want to go back to your comment about jessica right about becoming a caregiver because i think caregivers are the most undervalued human beings walking the planet are free and you made you made a conscious decision and so i sort of two parts are you a caregiver only to family members or is that actually your you know it's the best form of learning things right so yeah that's definitely a role that i will not be a caregiver for anybody other than my family i can think of right now because this is just kind of me and i only i only have it for m research to the second hard question first of course if you cut funding for the end of each fund most research in the united states yes it will impact the program the first part of the question is a little more difficult to answer yes that's something that you've probably heard  but i don't think we have any idea what is going to happen i don't think if this is really a partisan issue actually the president ther affects us all ok but politicians are there to serve you people must demand is funding it secret we're divided right now but it doesn't really matter does it because this disease to one fact all of this is an issue we can get right that's just  why interestedly in their family their uncle who is the guy who's in a nursing home now and he can't move forward or speak and his brother teams are still working they're nineteen months apart