of hope it's very personal for the charity aims to bring awareness and more importantly a cure or cure to muscular dystrophy but not any kind your hope i wanted to let you know because my number one question for my daughter has is how do you know about whatever the topic of this and your case about two years ago matthew le beau who was a prior guest on the show sent a solicitation for funds because he was running for charity he was running for supporting job hope which is a charity are hope you know it's it brings up you know positive thoughts and i thought wait a minute i know that name the name caught my attention what is your hope and why is the called jar of hope represents my son james james anthony rough phone he is the inspiration behind this entire foundation everything that we do every single day it's because of him and unfortunately he's diagnosed with a terminal muscle wasting disease that two hundred muscular dystrophy s so duchenne happens to be the number one genetic killer of all of them and this one happens to be specific to boys there is from what i understand to girls entire world w have the outer facts of this deadly disease otherwise it's just men because of the genetic mutation falls on the x chromosome so that's the science behind the disease to date where is research really not much there's deers a lot of hope but unfortunately there's not a lot of drugs in the pipeline to put into our boys and there's a lot of fundamental issues because of that because of the aging which generic and statistically the boys get diagnosed by the age of four and unfortunately they lose ambulation by nine you basically have five years to get yourself together and try and find a cure for your son so the pharmaceutical companies who want to rally behind this disease and throw money at it unfortunately are in a bottleneck and a race against time to find the boys who one have the same mutation who t turned ten march st ok if it could happen any any day that he might lose he could on fortunately slip and fall and break a fema you know unfortunately because of he's been on steroids since six years now so his role is bones are getting very very they're not developing as they should in a normal boy nor do they have the skill the muscle tissue to surround the bones and you describe it that way so you know since it is it's one hundred percent fatal there is nothing that can save these boys is not a child ever they can stand up and say i survived you share ok so what is the typical lifespan it all depends on the quality of life  just lost the boy a few weeks ago who was eleven we lost a boy a month ago since january has been six children have passed away from the age of eleven to twenty two oh my gosh this is heartbreaking let's  hundred and forty five in the afternoon my wife got a phone call from a geneticist says and how she learned of this deadly disease and then of course she called me and then we had to go and meet i wanted to confront the geneticist in person because unfortunately i was in denial of course how could my son have a muscle wasting disease as it was for at the time he was four years ago all right so what led to that you know was god bless her soul my son he was in preschool at three the preschool teacher early on saw something was off with my son he wasn't keeping up with all the boys on the playground so she made a call to my wife thought that's me should have looked at and yet the pediatrician kept the th to monday morning i didn't sleep i spent the entire weekend on the internet trying to research this disease see what's out there was i didn't want to believe that there's nothing i can do geneticist i'm going to go home and well my son there's nothing the medical community can do for him so i wanted to seek some sort of hope i did find a do or are there foundations out there so i sought them out and i wanted to get involved i wanted to be with them but unfortunately they turned my hope down which was just bizarre from that went to great work material was started but to point four billion dollars that he raised just evaporated there didn't help you it didn't help me won't help my son and there's all there's other families out there in  similar situation and we are there is just pure desperation to find something but there isn't anything so we a jar of hope welcome anybody who shares the same doesn't reject it's a new jersey became a full time job of hope i was in construction for twenty years i had my own construction company the reform design and build group out of new jersey and i worked in the tri state area but i was not then i don't believe on that fit of an individual now so thank you very much but back then because of the construction and the hours that we worked i was grossly overweight and my dietary habits were not what they should have been at all but did the my lifestyle i was working out of a truck driving from job to job to job and doing a lot of concrete so it was a very on healthy lifestyle and i had to do something for my sons immediately i sold everything i own december th two thousand and thirteen i had an epiphany ok that story how he took it my wife took the diagnosis very bad she just wanted to end not only her life but all of ours together because she had gone through some h hardships she lost her dad when she was thirteen she lost her mom when she was thirty and now she's looking on the barrel of a gun of bearing her son so i can understand her heartache and she didn't want her daughters to have to go through the last of their him to death and they really don't understand the true dynamic of this disease and what's going to happen to him and it's just tore my wife apart and it does today because she had a caregiver she's in the house with him every single day ok so if you make overnight putting the kids in the car and turn a car on and we all go to sleep together that value was the only outcome my wife can think of because of how run this this diseases and out name my son is going to suffer and she didn't want any of us to have to watch him go through that nor have him go through it so that's where her head was what happened because you're here thank god thank god family came to the house free pass it was it was almost like there was a mourning for my the loss of my son even though he was alive were people came with food and keep people came and when he was crying that afternoon and thank god somebody thought well enough to say i had maybe we should get the kids out of the house because my wife was unwell i was i couldn't stop crying all afternoon and i guess people didn't family didn't want to see my children to see my wife and i going through that and that's really what save us otherwise we probably wouldn't be here because i went i was going along with the plane with my wife because when you look at the disease and you look at my son's future it's inhumane if this if dogs live like this people but would be donating billions of dollars to this disease but yet because there's only twenty thousand kids in the united states and they tag this in orphan disease there's no money twenty thousand for this this particular t researching this disease because when i was younger i was going to bodybuilder i was in the gym so i was into sports i was very athletic so it just it just didn't make sense that my son could have a muscle wasting disease i might have accepted this or if they told me your son is going to die of cancer because i don't know anything about cancer but to be in a health and fitness environment when i was a kid until burnham my son's going to die of a muscle wasting disease it's just it and it's two things spoke to me one it's so bizarre and that in the nd was maybe this was brought to me because i have the attitude that i will never let something run over me never mind my son so monday morning at seven o'clock i want to stairs to my wife and i told her you cried all weekend that's it now something that's just in me and just said you're going to fight this you're going to run over this disease and if anything you're going to cure it just to just to avenge this disease and what it is done so for your family in forty eight hours and it just tore my heart out to see my wife like that and i couldn't even think at that moment in time of this disease and what was going to do to my son and i wasn't going to allow it to do it right  falls and it happens to be on the dystrophin gene which happens to be on the x chromosome and that's why men have the outward effects of this disease and women unfortunately of the carriers so they've got this deadly disease living inside them a lot of women and they don't know about it because they have two son ok and so they found that he has that genetic mutation ok so we could take it a step further if if they said listen we cannot we can understand the cure if your wife is the carrier so i simply asked a question because i don't want my wife to live with the but i found out very quickly that in addition community divorced once rampid men leave their wives which is just i'm sorry i could i could never blame my wife for my son having a disease especially she doesn't know if she's a james and sometimes they've run extra test but the test for this particular muscular dystrophy is not standard it's that's correct and it's all because of cost insurance companies won't pay there's a battery of tests that they take from the amniotic fluid woman over thirty five dollars i believe the ages and they test for down syndrome and a whole host of other anomalies that could happen to the child while in the washington almost once twice a month what do you have a year from from jersey if i was senator menendez doing something good for a change if you're on your side i haven't had the ability to get to him a congressman chris smith ross suddenly run dancer they certainly know him he's terminally ill he's going to lose the ability to walk in a very short period of time but you know something's wrong he knows how his father fights for him because very early on i went out on a campaign so the that this was a muscle wasting disease i went out to hit seventy nine gyms in seventy nine weeks and i gave seminars twice a week in health and fitness facilities throughout the country to see if there was somebody who could potentially know  have or perform to the time they need to perform again so i thought if they're doing this to increase the rate of recovery maybe we can do this to slow down the muscle wasting for my son so i found i sought out a doctor in middletown new jersey's name god bless his soul because very shortly he had no idea who i was but i was just hell bent on making sure i got in front of him and that he was going to help us and lo and behold within twenty four hours he called me and he said he had a chain before me it home and try and save your son's life so forty eight months later my son we worked it out which the f d a protocol is you can only going to bear a chamber for an hour and a half and if you want to go back in it you've got a week eight hours before you can go back in it again for only an hour and a half so i thought there's no regulations inside my house my son is dying i'm not going to let an f d a regulation stop me from trying to save my son's life so i slowly worked up my son to sleep st myself i use myself as a test dummy and there was nothing wrong with me after weeks of being in it and then i worked myself up to spending eight hours a night in there the him and i had the time when he was four we both slept in this chamber every other night and it wasn't until he turned nine did he say daddy i'm a big boy now i can sleep in there myself so he sleeps in this chair himself every other night well that's a very close a public it is space i put in a chamber one of my early doctor sentence you know because oxygen is essential for every living organism i figured if we saturate my son's system with oxygen and it's compression or it's pressurized right because with this muscle wasting diseas very very knowledgeable here about the science sounds like a size quit and you are very profit obviously construction work is a demand you know you can write don't take it and you keep that up did you did you go back to school to learn to start for yourself taught how did how did you learn all about this and it's also taught because i have to figure out this cure to to go back to school to hit the books  just hit the books the internet got wasis is a great tool for us and i'm studying everything i need to study about the human anatomy three internet ok so you thought you were in construction what is your schooling background unfortunately stop you from learning that's just a major thing that you do right so it's a charity and you yourself taught about how to treat your particular son so how do you bring more money into the charity  and utah and once thrown him back to utah he only nouns to me shows up at one of my gallows a three hundred person event that i'm talking to to try to encourage people to donate walking with this forward gall mint and dress that one would need to walk seven days in the desert self sustained stood in the middle my dance floor and mind you i didn't know him and challenged me because he had heard i had run the new york city m he had heard i ran a plethora of other five k s and and just regular races in the community and he challenged me a fun of everybody to run this race and it just it happened to be one of the best things that ever happened to me personally and to the foundation because now the foundation through running this grand grand race i've met people from all over the world and their name jar of hope the name duchenne muscular dystrophy is now throughout the world it's a and not only am i running it but i've had twenty five other insane supporters come with me to run this event and the unfortunate thing is i'm two thousand and seventeen i had a heart attack at mile one hundred and seven because i was not fit to run the event because i spent that was the do the turn in my son's chronological age where he was going to be nine and i was not going to allow this disease to put him in a wheelchair so i spent a great deal of time on him and not on myself but i still seven i climbed an eight hundred dollars foot mountain and at the top of the mountain my heart began to fail i have a heart condition and i should be doing any of this but i refuse to give up  how did they get you off to how did to my doctor because you think you are middle of nowhere and it was it was very very difficult and unfortunately with the area we were in there was a car but nobody knew how to navigate you because there's no cell survive to something like it's not your time you want to mission here to to find a secured to help your son oh my gosh but your son is ten how do you see this and if you could if you thought about that then my mind there's only one way and that's that's just my son living this disease there's no other there's no other way this sounds ok we wish you they come through and decide to have the best quality of life for every driver yet and with u mom i've come by to talk to you again and i want to let you know i'm running again this year but this year i'm running for tonya because james he is running out of it i may have lost you