you. know so for reasons he seems. not to sure are with me but to discover our strengths. because. through all of my moments i had which is why i got a black ribbon. symbolizes my mother the strong go out go through these have the strength to push through you no matter what i do i'm going to have. power and the positivity to just. go about my day everybody. so i just got a lot of them honest. because you have to make it like if you have a negative mindset. you think everything bothers you are you going to be for us.

what we. are our daughter katie was first diagnosed with a very rare son sensitive condition pigmentosa back in one thousand nine hundred four and we realized 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 somehow families are 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 will and go out and play at night. but it'll be

a camp to bring the families together and learn about how to live. right here on our right your mom says you have lots of pictures you have pictures i am. graduation. dermatologist zero. zero zero. so that's. 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 a v is next p.c. means what type of enzyme this missing from their d.n.a.

she's missing the x p c and something from her d.n.a. it also indicates what level her body was. 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 with x.p. kids that damage. becomes dead dead skin matter dead cells matter turns to cancers and fortunately sometimes these cancers can spread to the patients and the cancers are beginning much earlier. there's an average of. ten years. for the first. one i was growing. when i was done with. it was 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 see him here in a very mobile right of way just like any other kid here she is it just a happy little kid. next to another camper or no she's lost her hearing has a lot of ice a issues a lot of uneven issues she struggles with. increases her weight trouble walking. back aches as if to explain. it's the neurological aspects to. remember this is a. pathway so all you have to say just kind. of the type which is basically a large lesion. that would be repaired. in

some way that could happen in your brain but having nothing to do. damage with. what the. people. most of the patients who have found in japan have a form of severe. hearing and eventual. we have some studies of we can do x. or. scans of the brains of the patients and the brains that are actually shrinking

inside their heads the scole gets thicker in the brain spits. over. a life that you're right oh my goodness. you did this or that. i was. i was like thirty three wells. and made fun of me because my son. protective clothing you know i just imagine myself as a pound you carry the wiser looks like a power ranger the way i dress look like a party so i just saw that as a problem. you know have. all your review soon oh. well. if you step out in the sun know 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

a place called camp sundown and their leg was 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 vampire camp and i'm like no no no like they're not vampires they just can't go on this i'm. that is them but. if you see. 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 it's 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 you know what's it going to say that things like the headquarters of harley how did you know that was. a member nick

what was the how rigid. they 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 scrimmage down. the line and signature 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 like king out with people during the nighttime because either people have school or work so he you know he's either inside all the time or you know they 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. he. gives them the next time right. you know we really didn't get this. like. to move. to the gulf. i'm. done. right back where we're living you.

know there's 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. baby me my brother every once the family here going up with each other i mean a lot of people a family this in memphis tisha is that says this it was. seven. and. i had. to live and he does august but. we've had our apartment because number have. had my tights or. trying to think there's like one type of rock which is just an

extra can go on there which is like a measure of different types and sized have walls that are fused together. you sent your boyfriend. understand they here. his rise. and anyone. who was. now why do. i can't. have a girl i. can have both a person of your choice is it anything. like this going to see if somebody that

has drive. and. i'm going to. somebody is going to have the strength to go work it would have to be some of the you know would be supportive under the surgeries the man in the biopsy that was the you know. somebody. give me a positive mindset you know but first and then it was a tough one so. you're somebody who would understand. going to the grocery store. so it's by 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 the city 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 just like stop in and say hey i'm jason and this is why i wear this gear you know. have been you know. by. the by police and stopped by police. stopped by complete strangers you know people taking pictures of me and you know laughed about it i'm not really sure why. i mean no i. look kind of weird but. no ted it confused 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 suffer summers and people like. you know keep your face about it understand why.

it's ukraine versus russia again a minor maritime incident on the card straight is said to be anything between a major international crisis to a cheap campaign trick as ukraine interesting election cycle take your pick but one thing is for sure russia is deemed aggressive by the west even when defending its sovereignty. i've been saying the numbers mean something they matter the us is over twenty trillion dollars in debt more than ten dollars foreign tamping each day. eighty five percent of global wealth you want to be ultra rich eight point six percent market saw 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 is building

a two point one billion dollar a i industrial park but don't let the numbers overwhelm. the only number you need to remember is one one business shows you can afford to miss the one and only. condition i have is known as era throw poetic purple feria. acronym is e.p. p. . i was. four years old when i first remember having a 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 are two main things that night but i mean jason's a person who. he thinks outside of the box really easily and so i never felt like i was missing anything i mean. just like i think it's 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 a p.p. we were not a very good at it either because as we both know they can have a fulfilling life with the p.p. in all of jason's 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 computer tech 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 time frame times people look to the weather for like what 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 or is reversed you know why is this like. to go out and. play out in the rain titles and we definitely had picnics in the rain when you can . get to see these kids. harry is going to vote.

me i did say. the rain is the best it's rainy the clouds are usually the darkest. 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. than 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 can't and it has the highest energy and with. a range of energies as well who 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. 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 was 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. we actually

need. different types of. v.a.'s the right to see. it's always there during the day. is what gives you heat the rays that you could feel from the sun so when you go out in the five hundred. days you can feel the threatened 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. well we're going to set up outdoor games so they go outside at night and. during the day. well it's not very easy to see his approach because

it feels like everyone discovered. oh and you kind of appreciate it a bit more when you go. dark. 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 way that the u.v. meter works is that there is 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. as you can see that u.v. meter is registering numbers and for many x.p.

patients this. level of u.v. is too much and will be causing damage. and if we step into the full size you'll see that light meter is now registering in the thousands it's this amount of u.v. is enough to cause significant amounts of damage to people with. for even a short amount of time being outside and this amounted to. no more like a few seconds. one. theory for any . well i. experience a genetic disease in the united states and in 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 tension 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 really taishan one hundred generations ago in japan which is approximately two thousand years ago so that pay attention has been around for the right here just right 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 a rodent talking plea because she knows she's not alone the world with its feet. whereas the church on fire company church down new york and the church empire company that i first fell face together i think and games for our kids so they lead them to do water games and they're dressed up in the fireman's outfit 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 ever.

but. there is a lot of people out there would of. course are cases. or cities that may speak worse it is that it. is going to have a positive mindset you can. you know it's hard yes i've been the president 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 good years after 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. you find me. saying they. are. led. to.

ourselves the banks prepared to let the credit market collapse or are they going to do q.e. for now with the recent rate rises there is room for q.e. for they would come in and they would revert reverse q.t.r. quantitative tightening and they'll engineer another bond market rally. to call tony you know. i'm a little but i think you might. get one news we're buddies. one of them one night you should have been there so.

i don't want or i can't that's i mean yes i knew she needed that moved me and i did yeah i am kind of whom you could feel that he had a chicken does the night he made a move of one of the men that you know enough i don't know before had i think. it's revealed the three ukrainian ships that russia says illegally into the territorial waters had weapons and ammunition important to the international community has been quick to kiev not moscow in istanbul. spondee has been pledged to support companies define u.s. sanctions only. the french petrochemical john tower has pulled out of the launch.