so for reasons you see in this. month's issue or with me it says but to discover our strengths. where the weaker because. through all of my mom was a witch that's why i got a black ribbon tied to. the symbolizes no matter the stroke i go through these have the strength to push through you no matter what i want to do i got to have. power and the positivity to just. go about my day everybody. so i just got out of the mindset because if you have a negative like if you have a negative mindset. you think everything bothers you are you going to be pressed. you want to know.

what we stand. our daughter katie was first diagnosed with a very sensitive condition. back in one thousand nine hundred four and we realize that we didn't want her to spend the rest of her life alone and we knew there had to be other families out there that were going through the same experience we were and some how families were managing to make it so we needed to know who we could talk to what kind of resources what the scientists were working on we wanted a cure we wanted to find other families to figure everything out how to live our lives and we said ok we're going to do a camp it'll be a different campus these kids can only go out and play at night but it'll be a camp to bring the families together and learn about how to live.

on the. next day was. your mom says you have lots of pictures you have pictures i am. graduation. thanks p. dermatologist zero. zero zero draw my scheme in payment terms. the way x p. works is that there's a different subtypes of x.p. there's x p a x p b x p c all the way to x p g there's also an x p variant each one of those cases like katie's next p.c. means what type of enzyme this missing from their d.n.a. she's missing the x p c and sign from her d.n.a. it also indicates what level her body repairs where i might repair it in ninety

eight percent rate if i get sunburned i heal quickly she repairs at a two percent rate she doesn't feel it becomes permanent damage and with x.p. fits that damage. becomes a dead dead skin matter dead cells matter of that and turns to cancers. unfortunately sometimes these cancers can spread to the patients and the cancer is a big. when i was growing up well i was does that. hard for me to understand why. we're able. to say. so and this picture she was for this was our first. and she was able to. hear

the very mobile right. here she is it just a happy little kid. next to another camper or no she's lost her hearing has a lot of issues a lot of indian issues she struggles with. weight. back aches. it's the neurological. remember this is. kind of. which. would be. in some way. having nothing to do with.

what. people. patients who have been found in each patient in japan have a form of severe neurological teachin ratio or sensitive to the sun but they have problems with walking and talking and hearing and eventually they dying from an inability to swallow. food and. those that they think you know well. we have done studies of the we can do x. rays and. scans of the brains of the patients and the brains that are actually shrinking inside their heads the skull gets thicker in the brain spits.

a i think it's your right arm to let. you dig the thing. i was. i was like in thirty three wells. made fun of me because my son. protective clothing you know i just imagine myself as a pound you create the wires are looking like a power ranger we are just looking at a party so i just saw that as opposed to. you know have. all you need to suit me. if you step out in the sun you know. in school. and they're like shannon like where do you go during the summer and i'm like actually i go to place called camp sundown and they're like what's that i don't like oh it's

a camp for people that can't go out in the sun and they're like so tired and i'm like no no no like they're not vampires they just can't go and this. is them but. did you see yesterday that out of your this is like a safe house i guess they don't have to talk about what they go through with us because we understand and i think that's like the main point of camp is like we're here to keep you safe but at the same time. we understand what you're going through . so you don't have to tell us your story because we understand so just have fun. doing going to say i'm going to say that things like the core of the party i didn't know that was. a member not what i was just because.

we were at the new york state museum with our campers and we're here to see just the exhibits of new york state natural history animals of the past and future indian. records and things the museum normally closes at five every night that we're able to be here tonight because volunteers from the museum have come back late at night open the doors for us a lot of screaming a town. that isn't just a little bit but. yeah. i live in queens new york. and i don't come every year but i started coming here when i was two years old so i basically grew up here i've been coming with my older

brother chris but my older brother having experience just it's hard you know he doesn't really go outside during the day it's hard to i can go out with people during the nighttime because either people have school or work so well you know he's either inside all the time or you know we just pull for walks so when he comes here just he's able to do whatever he wants to do you know he has something to do he's occupied you know he has friends. on the next generation. you know we really didn't get this. like. to move back. to the gulf. i'm. done. right back where we're living you. know this is

a picture of my brother nine when we were young on our first serious camp. at this i think the camp fire i used to be attached to him very clean and stuff. like. baby me my brother every once the family here going up with each other i mean a lot of people a family this event this tissue is the sense this it was. seven. of the mind and blood pressure so. i had. to live and he does august but. we've had our. number have. had my tights are. trying to think there's like one type of rock which is just an extra. there which is like a mixture of different types and sized paddles out or fused together.

you send your boyfriend. understand they here. his rise. and anyone. who was. you know why you do what you do. i can't. tell you you can. have a girl. if you look into both the person of your choice is there anything. wow i want this to see if someone of that has strengths and. i'm going to.

somebody that i have strength to go work with have to be some of the that would be supportive under the surgeries the man in the biopsy that was the you know. somebody like give me a positive mindset you know but person that it was a tough one so when you have somebody who understand free. going to the grocery store. so this guy outside. but for the purposes of the video you know my son dear this is what i would normally have to wear when i go outside when it's not sun. one of the places i lived i lived in city and i would get shot of that all the time. i think a lot of people in town recognize me by sight but they don't really know my name. it's kind of awkward to just like stop in and say hey i'm jason and this

is why i wear this gear you know. and then you know. by. the by police and stopped by police. stout by complete strangers you know people taking pictures of me and you know laughed about it i'm not really sure why. i mean i know i look kind of weird but. those tend to confuse me i don't know if i saw someone walking down the street like that if i try to keep my distance. i don't know who this guy is why is just like this just try to keep my distance but so for some reason people would like. you know keep your face about it understand why.

join me everything on the alec silent show and i'll be speaking to us of the world of politics sport this list i'm show business i'll see you then. i've been saying the numbers mean something they matter to us as over one trillion dollars in debt more than ten white collar crime tempi each day. eighty five percent of global wealth you loans to the ultra rich eight point six percent market saw a thirty percent rise last year some with four hundred to five hundred three per second per second and bitcoin rose to twenty thousand dollars. china's building two point one billion dollars. but don't let the numbers overwhelm. the only number you need to remember it was one business show for it to miss the one and only.

condition they have is known as iraq throw poetic purple feria. acronym is e.p. p. . i was. four years old when i first remember having first attack from the sun and i was diagnosed when i was a weapon the pain is indescribable it's feels like really really bad chemical burn but it goes through your skin in your muscle down to the bone and there's no relief painkillers don't work and the last for five days to a week pretty debilitating. and i was dating jason i mean it was definitely is a different experience because there's two things that night but i mean jason's

a person who. peeping south side of the box really easily and so i never felt like i was missing anything i mean. just like a bad thing is just so he's so happy you know he didn't play victim to the world he didn't play like. that he couldn't do anything. you were. no there's no cure. genetic disorder. we decided we would have children obviously because we have two of them and. actually neither one of them have a p.p. . and we genetically tested them for that but if they did have the p.p. we were not a very good at it either because we both know they can have a fulfilling life with the p.p.

you know and jason's an electrician he he's the provider of the family he works full time right now i work as an in-house maintenance. for a manufacturing plant i work during the night shift and that way you know i don't have to be in the sun is something goes wrong outside the plant i can go up in the darkness and not have to worry about having any p.p. attack on cloudy days i can still i can so get sick but it's like. so i got a sunny day i get like three minutes we're going. to cloudy day anywhere from an hour to two or three hours. you know family times it's strange times people look to the weather for like.

what's the weather going to like me want to take make me want to eat you know like a strange thing to watch a movie is reverse you know it's like. to go out and. play out in the rain paddles and we definitely had picnics in there raymond you can. get to see the skin. harry is going. to do. i did a back and the rain is the best it's rainy and the clouds are usually dark.

ok. normally windows are to use for light to bring light into the house and often they'll build it so then the most windows are in the direction of sunlight we didn't of course want the sunlight in our house but you know we don't want to let's say we live in the dark so we have these windows here the orange looking ones and that's an amber tint it's a film that they can put on the window that they typically use for medical technology remember where at camp sundown it's for people with x.p. most burner or you know. those people get harmed by ultraviolet light or u.v. light. then my condition is p.p.

. and people with e.p. p. are sensitive to blue light so when i'm in the sun outside i can't be in the sunlight because it's got that blue light but on the inside i can put my hand right up to the window and i have to worry about it because all the light to harm is because blocked. as you know light contains a rainbow of colors and it contains colors that you can see. like a light these are different energies of light and so green has more energy than red blue has more energy green and has more energy than blue. we can see the light. but we cannot and it has the highest energy and with. a range of energies as well moved to this is blocked by the ozone layer but some of it gets through. my grandfather had a son our g.'s since childhood we don't know what exactly he heard. and

jake started having we are three actions his very first moment he was ten months old. and we couldn't really figure out what it is and by the time that he was about three years old. we started watching because of my grandfather started. because we noticed it was seasonal so he would break out as soon as you know sort of spring started and it would and close to the beginning of winter and every year it kind of just got a little bit stronger and a little bit more intense and a little when it became a little more intense it was easier to pinpoint what it was all. different types of right. so uvas the right to see. it's always there during the day. is what gives you he

worries that you could feel from the side so when you go out in the five hundred. days you can feel the sun beating on your skin right yet that's so when you go outside in the winter do you feel that heat beating on your skin when you're outside. there is. on the screen. we're going to. well it's not very easy to see is because it feels like everyone discovered. and you kind of appreciate it a bit more when you go. this is a window that's. ten.

diseases. this is. one of the things that we discuss is the use of a u.v. meter this is a u.v. meter and the t.v. meter works is that there's a photo electric cell here at the top of the meter and all you do is shine that photo electric cell at a light source for example the sunlight coming through this window. you can see that. registering numbers and. this.

and if we step into. this amount enough to cause significant amounts of damage to people with. for even a short amount of time being outside in this amounted to. no more like a few seconds. one two three four three zero zero zero idea. or. i experience a genetic disease in the united states and europe expiate is about one in a million in other parts of the world it's much more common for instance in japan it's one in twenty thousand and we did some studies that show most of the patients with x.p. plan have the same patient of the same great community. and we call that

a fountain mutation and we were able to do studies of the d.n.a. and show that this founder retain one hundred generations ago in japan which is approximately two thousand years ago so that pay attention has been around for the . year just part perfect example. i started out like. a matter of last year she thought she was. worse me or. she little by little she. she opened the door no you see her right in the. plane because she knows that she's not alone the world experience. there. were at the church on fire company church down new york and the church the fire

company that i first fell face together i think and games for our kids so they led them to do water games and they're dressed up in the firemen self it so they get to feel what it's like to be a fireman all the ows. and they suit against each other with water and then they're going to have some hot dogs and some s'mores and they're going to have back in place games of all. but. there is a lot of people out there were. worse are cases as you know or cities that they speak worse it isn't easy you just gotta have

a positive mindset you can. you know it's hard yes i've been the president told thanks pete well a little because we want to be stuck in your house or your room in the summertime. and. i know that feeling and i know how a lot of people go through what if. depression or anxiety because it's not there is not a good kids you have to have a good support system at home or somebody to talk to that's what camp is about you know we make you feel like part of the family and you just want to go home afterwards. they you want to stay forever.

well you can hear that fox. can hear. you but me. saying they. are. us veterans who come back from war often tell the same stories. were going after the people who were killing civilians they were not interested in the wellbeing of their own soldiers either there already is several generations of them so i just got this memo from a certain branches off that says we're going to attack and destroy the government

in seven countries in five years americans pay for the wars with their money others with their lives if we were willing to go into harm's way and willing to risk being killed for a war then surely we can risk some discomfort for an easy for. us.

subscribe to but people are already content for just twelve euro's fifty per month . after crossing the russian border. with the russian border. the action of the ukrainian vessels in the straits. releases the testimony of the captain of the ukrainian ship detained in the. provocation three ukrainian ships detained by russia which says they illegally entered its territorial waters. another reckless russian escalation nothing in.