we are constantly bombarded with everyone's nare saw cystic -- nare saw cystic tendencies.always been there and now we are exposed to it more. you have to be nare saw cystic. it is a survival tactic. it is your world that everyone else is living in. >> narcissism is a different form of love, isn't it? it is a love you can love yourself in return. sure. sorry. social media. reality television. google and facebook. >> you just listed anything that came to your mind. >> that was a serious argument. these are the things that really kind of make us nare saw cystic. >> carly, would you like to make sense of that? >> why google plus? >> google plus, that's where the narcissists are. you get their e-mails and google will e-mail it. it says you miss your buddy matt lewis. he decided he needed to post something that nobody looks at and now i am getting e-mails about it. >> i think it is only going to get worse. i have a couple of friends with young children. they are saying that their daughters' ipads and whatnot are filled with selfies which makes me sad and it also makes me not wan

this has been transformative and the cystic fibrosis foundation really made this work possible becausey helped to create the patient community necessary to rapidly move into clinical trials to get the tissue as well as the patients that could create a foundation for understanding the opportunity and moving forward quickly on it. and put up some critical resources, not just patients but also dollar resources to help move the project forward so there's a lot of important activity in this area and i think we need to look at what's being done and its incredible success and importance and then build on it. and i do think this effort can put a major focus on this and help us advance this work. >> thank you. mike burgess. >> thank you, chairman and thanks to all of our panelists for being here. dr. collins, the offer still stands. i will be one of our test subjects for the safety of the ebola vaccine. you rejected me on age criteria before. i thought that was discriminatory on your part. >> i had to reject myself on the same grounds. >> i still stand ready to offer my services. we had a good

this event is cystic fibrosis foundation's largest national fundraiser event. each year more than 125,000 people take part in walks all across the country to raise people take part in walks all across the country to raise funds for cystic fibrosis people take part in walks all across the country to raise fon my journey across america, i've learned that when you ask someone in texas if they want "big" savings on car insurance, it's a bit like asking if they want a big hat... ...'scuse me... ...or a big steak... ...or big hair... i think we have our answer. geico. fifteen minutes could save you fifteen percent or more on car insurance. 23rd annual eagle national back 5k walk/run to fight cancer took place in drexel hill this morning. the benefit the delaware county regional cancer center, over the years this walk has raised more than $500,000, and our very own david murphy served asthmas ter of ceremonies a long with the official duties, david spent the morning greeting people on hand and posing for pictures as well. >>> still ahead have a half million-dollar lyi

look at gunner, he seems like a typical 20 something but the son of former nfl quarterback has cysticbrosis, a life threatening lung and digestive disease. >> i have given myself no other option fwou live a normal life. >> that includes twice daily treatments in a mechanical vest to clear his airway and medication before eating anything. >> i have to do these therapies and take my medication every day if i want to survive. gunner was diagnosed at two. when you get that news you immediately think the worst. >> boomer had just been traded to the new york jets. he almost retired but realized football gave him a national platform. >> figuring that i am in the biggest media capital of the world and how i could use that platform to leverage who i am to raise money and awareness for the disease. >> that year the super bowl quarterback and his wife launched the boomer esiason foundation. >> we raised money for scholarship grants and we support hospital development. >> let's go. >> over two decades, boomer says the found raised more than $100 million. >> it's not easy. it's painstaking. it's t

born with cystic fibrosis but so far so good. he's been doing great. his health is good and he's really really excited to go. as he calls it dizzy knee world. >> the children should be a welcoming party at their hotel followed by a splash party tomorrow and off to dizzy world. something magic foundation has sent more than 400 children to disney to date. >> that's super exciting. >> it is. get this a local restaurant that's just about to open has an interesting new rule. >> yeah. no tipping allowed. >> that's right. the restaurant is telling to you leave your extra cash behind. why the owners believe it's a place their employees will never want to leave. >> and an area doctor had to act fast to save lives on the battlefield of iraq and afghanistan. the valuable lessons he learned that are saving lives right here at home. >> keith. >> dawn coming up in sports eagles fan finally get their wish. chris baker has gotten has punish many but not for the reason you think. an unlikely player will be the center of attention this sunday in san francisco. >> and co

and he has cystic fibrosis and the charity group partners with american airlines, something magic foundationo fly jack, his sister, ashley, parent and grandmother on an all-expense-paid trip to orlando. and we caught up with them at the airport before they took off. it is to help give this entire family something to smile about and allow them to take their minds off jack's illness a few days and simply have fun. >> it's amazing, unbelievable. almost feel a little guilty like i am not worthy, but i am definitely super appreciative. and there is a mickey mouse clubhouse show, and he is excited about that. >> and this is the volunteer work our employees do. pretty proud for a guy like me who comes in seeing what they do for the community and things like that. it is a great moment. >> and it nenes so much -- means so much to the family. american flying 36 children from all over the globe to take part in this vacation down at disney. of course disney is our parent company at "action news," so we wish them a great time down in florida. >> that will be unforgettable. >> magical for sure. >>> well w

the cystic fibrosis foundation really made this work possible because they helped to create the patientty necessary to rapidly move into clinical trials. to get the tissue as well as the patients that could create a foundation for understanding the opportunity and moving quickly on it and put up critical resources. not just patients as well as dollar resources to help move the dollar forward so there's a lot of important activity in this area. and i think we need to look at what's being done. and its incredible support and success and build on it. and i think this effort 21st century cures can put a major focus on this and help us advance this work. >> thank you. mike burgess. >> thank you, chairman and all the witnesses being here. i'll be one of your test subjects on ebola vaccine. you rejected me on age. i thought that was discriminatory -- >> i had to reject myself on the same grounds. >> i still stand ready to offer my services. we had a good -- with manhattan institute we had a very good round table and i think faster cures was parter of that up in boston. and the concept of adapt

eight year-old from middletown suffers from cystic fibrosis is. this is in anticipation of her wishing coming true for a family trip to hawaii. >> very surprised that everyone is doing this for me. >> wonderful little girl. never been on a real big vacation like this. i don't think her family has either. so we are so exited to send her mom, dad, grandmother and her. >> very, very exciting. emily says she will stay on the beach all day. they leave for that are dream vacation this weekend. have fun. >>> i wish them perfect weather in hawaii. >> congratulations. >> no one will confuse our weather for hawaii but still wasn't that bad to home lie and rest of us. >> beautiful day. terrific day. temperatures soaring through 07's, some spots 80's. by the time we work our way through weekend it will feel like football weather in time for eagles game. temperatures really taking a plunge. outside still enjoying the the last minutes of daylight down the shore walking the boards, you can look through skies cam three here in ocean city cape may county. never to

symptoms with the devastating and this has been transform of a and provides the patients and the cysticundation made this work possible because they helped to create the patient kmund necessary to move into the trial to get the tissue as well as the patients that could create a foundation for understanding the opportunity and moving forward quickly on it. that's to conduct the critical resources and the patients and the dollars to help move it forward so there is a lot in this area. i think we need to look at what's being done and it's incredible success and importance and build on it. >> thank you. >> thank you, chairman. that won't be one of the test objects. you objected on each criteria and that was discrimination on your part. >> i had to object myself. >> i still stand ready to offer my services. we had a good with manhattan institute, we had a good and that was part of that. i have been in boston. the clinical trials. the funts once it's approved, they are

who is more nare saw cystic, kanye or you? >> he is. i am trying to learn his ways.d woman crossing the street and hurry up. hurry up. >> just push her. i don't do that. >> no, you don't. >> if i spend good money, and it is expensive and i actually have a seat, i will sit if i want to sit. >> that's true. >> and why he would wait for people to stand, he waits for no one. i don't know why he would want to wait. >> people who are at concerts with seats and insist on standing the whole time and sticking their iphone up, they are the problem. >> they are the problem. they are one of 99 to quote one of these songs. the one thing that bothers me the most is not the mistake he made, but the mob mentality of pressing everybody to start yelling at some person. >> apparently everyone out there was doing wheelchair motions. apparently kanye couldn't see it was a wheelchair and he doesn't know that this is the universal sign. >> that looked like a choo-choo motion. >> that may have been one of the dances from the 80s like the sprinkler. >> we all have the faux-pass i was on stag

you learn which lumps are there because it's your period or because it's your body is getting more cystic. if your find a lump like i did at 31 years eeld, i nudely it wasn't there before. i nudely to seek professional help and tell my doctor the mammogram came back false negative, but something is wrong with me. i have to get a bipsy. >> teenagers, women in their 20s and 30s don't think they're e awire of your breast health. knowing your parent's genetic history is important. eating healthy is important. exercising and doing your breast exams on a regular basis. perhaps once a month. in your 20s start doing clinical brea exams at your doctor's office. mammograms are really good tools for breast cancer. >> people say they hurt. but cancer hurts more. so i tell people that all the time. and because women have denser breasts under 40, it may not work for women who are younger. i would say also do ultra sounds and 3d mammograms as well. >> you started the tiger lily foundation. >> i began that as a blog in chemotherapy to help women understand the risk of breast cancer. my doctor told me i d

. >> you know what is funny, it just goes to show you men who do this are generally nare saw cystic -- nacisitic. i will send this out. women are better looking than men. >> but it is men who always do the hacking and the leaking. >> i figure the taliban hasn't released them yet. >> an interesting point when you put them together like that. it seems like a lot of people are more angry than this. is it because they view jennifer lawrence as america's new sweetheart. >> she is everyone's best friend. and if this can happen to your best friend, it can happen to you. i think people are nervous about these privacy issues and everyone is now going to the iphones and the changing their settings for their cloud. what we can really take away from this and what our best friend can tell us is trust no one, not even yourself. especially after a a few cocktails. >> you have a cloud much like pig pen. r9k÷ brown. >> you love snowden and you love jennifer lawrence. >> don't you see that one of those loves has got to give here? >> no. >> i don't even know where to begin with your comparison. even cal

every disease, take cystic fibrosis works have appeared actually there are 150 different communications in that chain. each of which may translate to a slightly different phenotype and prognosis. and so we need ways to rapidly -- that goes with cancer and many other diseases. and so we really need to rapidly get to a point where we have a true standard that we can all agree upon so that we know what we are dealing with. and yes, it will rapidly improve development of drugs for these series conditions >> i share your enthusiasm for genomic testing. i am somewhat more pessimistic because it seems like i could remember in my first term on this committee which was many, many years ago, talking that some of these same things. it's sort of like the jetsons flying carp or we are still waiting for that to happen. on the issue, and at hhs, you did your stood on antibiotic initiatives, the incentives for development of new drugs, vaccines and rapid diagnostics for bacterial diseases. talked about moving to neil in monetary terms for companies by a reduction of the time for political trials, corre

he was born with cystic fibrosis but so far so good. he's been doing great.is health is good and he's really really excited to go as he calls it dizzy world. >> got to love dizzy world. i'm guessing the children are about to turn in. after all they've got big day tomorrow beginning with a splash party and hanging out with mickey and the gang. >>> a four year old girl is captured the hearts of philadelphians even though her daddy is a cincinnati bengal. devon still played for penn state and last night we showed you the pep talk still gave little lea just before her cancer surgery. it was amazing. and now take look at this picture that her daddy just posted. still tweeting made some big strides today being able to sit up on her own, got myself a little trooper. and do you see that beautiful quilt wrapped around her? that quilt caught fox 29's bruce gordon's eye. >> reporter: inside a no non-descript storefront in a lip couldn't highway shopping center they do their work. quilts for kids quilters working tirelessly to create the colorful blankets that will this

needs to be bluntness by our president when an american is beheaded at the hands of a ruthless, sa cysticis group, you don't need to be timid in that moment. >> mark? >> i don't think the president's policy has been timid. this is a week where the leader of al shabaab has been killed. osama bin laden was killed. air strikes. terror drones, preside for drones use me, used in yemen for the last six years at least. we've seen so match militarism and war from this president i think it's absurd to say those timid or weak. >> 40% of iraq is in the hands of isis, that's timid. >> yeah, but isis in iraq is not coming from obama being timid. if anything isis in iraq is from the american occupation in iraq. let me respond to the actual question. >> thin red line in syria. another example of being timid is the thin red line and yet we didn't back it you. >> i don't think -- it wasn't timidity. the issue was articulating the line in the first place. the president's decision not to bomb syria because of chemical strikes was correct. it's how it was articulated. i agree with you on one point there are

raising millions of dollars for her favorite causes, including charities helping people with aids and cystic fibrosis. even into her 70s and 80s, joan rivers seemed like a force of nature, working nonstop, never even hinting at retirement. >> i don't want to retire. i don't want to go and sit in the sun. i don't want to go and learn to garden. i paint. who cares? >> her age simply became new material. >> you reach an age -- they applaud because they hope the sound will make me die and they can get my apartment. >> but on her 2012 reality show "joan and melissa" before heading into yet another surgery, joan talked to her daughter from the heart about what life would be like when she's gone. >> if it ended right now, amazing life. and you've been wonderful. and we've had a great ride together. >> you know, i know you're nervous and i feel awful about that. but you don't like to feel like people like you or care about you or want you around. >> it's not about me. it's about you. and if something happens, things are fine and life is fine and life is so much fun, it's one big movie. >> i know. >>

raising millions of dollars for her favorite causes, including charities helping people with aids and cystic fibrosis. even into her 70s and 80s, joan rivers seemed like a force of nature, working nonstop, never even hinting at retirement. >> i don't want to retire. i don't want to go and sit in the sun. i don't want to go and learn to garden. i paint. who cares? >> her age simply became new material. >> you reach an age -- they applaud because they hope the sound will make me die and they can get my apartment. >> but on her 2012 reality show "joan and melissa" before heading into yet another surgery, joan talked to her daughter from the heart about what life would be like when she's gone. >> if it ended right now, amazing life. and you've been wonderful. and we've had a great ride together. >> you know, i know you're nervous and i feel awful about that. but you don't like to feel like people like you or care about you or want you around. >> it's not about me. it's about you. and if something happens, things are fine and life is fine and life is so much fun, it's one big movie. >> i know. >>

that what's my daughter that passed away 11 months ago from cystic fibrosis would want. >> reporter: paying it forward is where this story started. on saturday the company found themselves frustrated at the sushi restaurant with one overwhelmed waiter. kyle hanson says he walked into a full restaurant at about 5:15 after another server called in with a family emergency. >> it was pretty stressful but what are your options? you can either freak out or just do what needs to be done. >> reporter: the couple, who have both spent a fair amount of time waiting tables, decided it wasn't worth getting upset. >> we just kind of switched our mindset into let's just enjoy dinner. >> reporter: they were sitting here on saturday evening, then at the end of the night when they were done with their meal, they got their bill and they wrote a note on it and left a $100 tip. >> it says we both have been in your shoes. just paying it forward. >> reporter: kyle says now he just wants to say thank you. >> that was super unexpected and really nice. i mean, it caught me off guard. i expected -- i wasn't ex

younger children and kids who have more underlying respiratory illnesses like asthma or cystic fibrosissenting with a more severe form of it, presenting with respiratory distress and requiring treatments and sometimes being intubated having a breathing tube. it can get pretty severe relatively rapidly. >> when you hear the words gasping for air that can scary especially when it can be deadly. no reports of any deaths with this? >> correct. no reports of any deaths. in the united states we have a very good medical system. if a child presents where they suddenly have a high fever and coughing or having difficulty breathing they need to get immediate medical attention. >> are we starting to see this because all the kids are back in school and it is like a petri dish? >> absolutely. when kids get back in school we see an uptick in viruses. whenever they are together there is a huge uptick. >> how do we know the difference between this and the common cold and how do we treat it? >> good question. it is sometimes difficult to differentiate the symptomology because the common cold and this vir

every disease, cystic fibrosis for example, there are 150 different mutations in that gene. each of which may to a different feeno type in diagnosis. that goes with cancer and many other diseases. we need to rapidly get to a point where we have a true standard that we can agree upon and so we know what we're dealing with. and we will rapidly improve development of drugs for these serious conditions. >> i share your enthusiasm for g gnomic testing. i seem to remember in my first term on this committee, many, many years ago, talking about some of the same things. and it is sort of like the flying car. we're still waiting for that to happen. on the issue and at hhs, you did your study on the antibiotic initiatives and development for new drugs, vaccines and rapid diagnostics for bacterial diseases. and talked about moving the needle in monetary terms for companies by a reduction of the time for clinical trials. correct? >> yes. >> is it really possible to move the needle on that? >> well, i believe for the, say the limited population antibiotic development use, that is possible

district theft statistics aside thyssen the innocent particularly cystic threatened this ..., a core of the new affiliate in the indian subcontinent that was announced as social media has done september 3rd. interscope cox that in addition to the brink of the tragic. >> elected thank the chairman and remember from this hearing and i would also like to thank each of the presenters, members of the panel for your service to the nation having served on this committee from the beginnings of the recovery creating this department. i know how important the issues that all of you gentlemen are speaking of it is important to hold that the constitution, to tell all those who would have a malicious intent toward the united states that we will not sacrifice our values, liberty, commitment to equality and justice for their chairs to place. i think all of you for recognizing as my ranking member indicated that we are not here to label says the state, is long, or the muslim people but to ensure the security and safety. of what is the first of all said that as i was looking over materials south that

every disease, cystic fibrosis for example, there are 150 different mutations in that gene.ach of which may to a different feeno type in diagnosis. that goes with cancer and many other diseases. we need to rapidly get to a point where we have a true standard that we can agree upon and so we know what we're dealing with. and we will rapidly improve development of drugs for these serious conditions. >> i share your enthusiasm for g gnomic testing. i seem to remember in my first term on this committee, many, many years ago, talking about some of the same things. and it is sort of like the flying car. we're still waiting for that to happen. on the issue and at hhs, you did your study on the antibiotic initiatives and development for new drugs, vaccines and rapid diagnostics for bacterial diseases. and talked about moving the needle in monetary terms for companies by a reduction of the time for clinical trials. correct? >> yes. >> is it really possible to move the needle on that? >> well, i believe for the, say the limited population antibiotic development use, that is possible.

give one example from last year everything was especially inspired to a 10 year old girl who have cysticibrosis who have two lungs that were very and did a double transplant to live except there was this old archaic law restriction that events kids under the age of 12 from receiving adult lung transplant. she was first i was supposed to get against the but couldn't get it because this old regulation despite recommendations for doctors and many more given her size the her parents understand the lobby, try to change the policy. beethe unsuccessful but it looks like she is going to die. they start a public campaign, started petition on change.org, got 3000 people to join, get endorsements of senators and congress and cnn, others covered in a week of campaigning and hundreds of thousands of people mobilize, government ends up changing the revelation, gives her two lungs and changed her life agenda for all the kids who -- all of the kids as well. we see his kind of thing all the time. it's not just around government stuff, it's a lot of corporate stuff as well. just yesterday coke and pepe an

>> i don't have those crazy things, you have to be so nas cystic to go around taking feud pictures ofstoreing them in your phone anyway. >> you might with your husband or something, or not your husband. >> oh, come on, what do you feed a pick for? >> basically, everybody looks pretty similar naked. i see it all the time. i shower every morning, i don't need to preserve that moment as a memory. >> what i think has happened, i don't have pictures either. i think it's a generational thing. when you used to have the send it to the photo place. i don't think they would take them. they were worried people would see them. now everyone has a digital camera and os stenably there is no photo mat guy or gal to see it. >> there is a whole thing going on. >> i ask why? i don't have a problem with it. but why? >> the male member and the female, they're pretty common. each of us has one, don't we? right. >> 50-50. or 50.2, 49 plus. they're everywhere, aren't they? >> anyway, we are also along with that story and those pictures, we are also watching shares of netflix this morning the company announci