there are things like cystic fibrosis that you might pass onto your children.ut then also other things like your eye color, which is interesting in that it teaches people about genetics and things like caffeine metabolism, which again is just really interesting -- and lactose intolerance as well. emily: i would love it if you could to take me back to that day where you got that now infamous letter from the fda. anne: it was november 22, 2013. we were actually at an off-site planning for our future. we were all in great moods, because we had hired a great number of people. we had a number of people that had started that week. i think what we learned after that moment is how much there was a disconnect between what we thought we were trying to doing with the fda and what the fda actually really needed us to do. emily: did you think for a moment, oh, my goodness, i you could lose the company? anne: it took a while to understand. there was probably about six weeks time period there where we talked to a number of lawyers. we talked to the fda. we talked to groups. i

hundreds turned out at wilson farm park for the great strides walk to fight cystic fibrosis.een a lot of progress in recent years in helping cf patients live longer but these folks say they'll continue walking until a cure is found. >> jeff here now with sports. tough series for the phillies and against of all teams the lowly braves. >> one of the worst teams in baseball but look, the phillies have not been hitting, they're hitting .230 coming into play today. worst by the phillies in 131 years. it's been tough to watch. name the offensive category and the phillies are among the worst in baseball at it batting average hits runs homers. we could go on and on and on. in the finale against atlanta phils trying to make sure this doesn't go on and on and on. ryan howard who has the worst average in baseball on the bench today as the phils try to avoid being swept by the braves. second inning bats coming a life. cameron rough a career high three hits including a solo shot. phils take a one-nothing lead. peter borges rbi single. maikel franco who has been struggling, the single. phi

becomes prolonged period, that's called chronic paining tight its, and typically things such as cystic fibrosis, lupus, a lot of high tri-glycerides. some people have tri-glycerides in the 800 and 900. those are the risks along with gallstones and alcohol use. >> dr. siegel, i know you said it can be treated, but what if the pain is really not significant. i'm just take a nap. ride it out. take some aspirin or something, i don't know. what happens if you don't treat it over a period of tame in. >> that's a great point, because the symptoms we're talking about can be vague. it doesn't have to be on the left. can be in the center and be bloating. may not even have pain at all. you may just not feel right. over time if this is not created it can lead to chronic pancreatitis which is a huge, huge problem where your pancreas stops making enzymes and you end up having to replace them and put you on a low fat diet. pancreas is one of the most important organs in the body. >> only have one. >> a big organ. >> i also want to mention it also makes insulin. not the part of the pancreas we're talking about

born with cystic fibrosis, she struggled just to breathe. >> my life was different. watch netflix for hours on end. >> reporter: something life changing happens to mariana. her healthy lungs were a perfect match. >> now i can go to school, see my friends, do anything i want, next . could do. >> her friend was prom. >> when prom comes up, mariana is the one. >> reporter: so by taking her to prom, colin is bringing his best friend, too. >> he would think that's amazing. >> i want kale la to be caleb to be a part of it, too. >> the story has a fairy tale ending, too. family, friends, and community raised the money to fly her to cincinnati to go to prom. caleb's parents' decision to donate helped over 70 people. if you would like more information on becoming an organ donor, check out the 9 news app. >>> we went 56 the high today. average high d we do? we'll talk about that tonight at 11:00 when the numbers are in feeling pretty good. a live look outside, it's 51. winds out of the north- northwest at 12. we have good rains to go through another couple of hours and overnig

. >> i grew up at the childrens hospital, because of cystic fibrosis. >> what do you say to people toet these phones ringing? >> research is the key and that is what daisy days support is research for the cancer center and that gives children a chance to dream big and be miss philadelphia one day themselves. >> i'm bringing in the robinson girls, young ladies i should say. you see jim gardner is taking a phone call now and some other volunteers here. and the phanatic is here. he has the number psyching us up for the donation drive. 1-877-940-6222. and i have here with me tory and chase robinson from villanova, with a very generous donation from your family this afternoon. $15,000 to give to the childrens hospital of philadelphia. tory tell me why this is important to your family. >> this is very important because childrens hospital of philadelphia not only a great hospital but a great resource and we hope to help bring it to its fullest potential for patient care and research. >> chase who would you say to encourage people to call? >> probably that cancer affected us all and we hope t

she had cystic fibrosis and needed a healthy pair of lungs, her donor was her prom date's classmate. kayla who died two years ago. collin had only met mariana once before but he says he knew he wanted to take her to the prom. >> called to take her because kayla got part of her. >> i'm grateful i can be here for kayla. all of a sudden, i'm like, just to be able to -- i know i'm not kayla by any means. i am -- i'm a little bit of him. >> makes me want to cry. they were on to take photos of mariana before the dance, they gained a daughter through the loss of their son, mariana is just one of more than 70 people who wanted from kayla's organ and tissue donation. still ahead donald trump's becomes president he promises it will happen. >>> charlie l e d u f ftraveling to texas. how it's leaving american's stranded in what they call a no man's land. pat toomey started his career as an investment banker. then, a wall street wheeler-dealer overseeing stock trades in new york, london and tokyo. next, toomey moved to hong kong to work with wealthy chinese investors. in the senate, it's no surpr

he has cystic fibrosis. >> all of my attention goes to toward brayden. >> reporter: christie doyle and two fellow stylist brought the salon to them. >> so they think for that good 45 minutes, like i am in a happy place. no needles or shots or surgeries. this is a happy place. >> reporter: christie got the idea in 202 when she met kayla a nine year-old family friend diagnosed with neuroblastoma. the she's now 13. >> christie had this idea to come over and cut it short so it would be easier to lose. >> he spent, an hour or two with kayla. it just transformed the the room from the sad hospital room to a party. >> reporter: over the course of kayla's treatment, christie kept coming, bringing bright bows and ribbons. >> i left that day feeling like i wanted to spread this to other families and other kid who are going through such harsh situations. >> reporter: her non-profit mission, christie, cares gives free haircuts to patients and families at ronald mcdonald house at st. christopher's hospital and chop. >> it allows our families to just get a breath of fresh air in terms of what they ar

he has cystic fibrosis. >> all my attention goes toward taking care have brayden. >> reporter: on thisand two fellow stylist brought the salon to them. >> they think that is a good 45 minutes, i'm in the happy place, i don't need any needles, shots or surgeries. this is a happy place. >> reporter: christie got the idea when she met kayla a nine year-old family friend diagnosed with neuroblastoma. she's now 13. >> christie had this idea to come over and cut it shorter so it would be easier to use. she spent an hour or two with kayla. it transformed the room, and from a sad, hospital room to a party. >> reporter: over the course of the kayla's treatment christie kept coming bringing bright bows and ribbons. >> i left that day feeling like i wanted to spread the thought of families and other kids going through such harsh situations. >> reporter: her non-profit mission christie cares, gives free haircuts to patients and families at the ronald mcdonald houses at st. christopher's hospital and chop. >> it allows our families to get a breath of fresh air in terms of what they are going throug

she suffers from cystic fibrosis and received a lung transplant to survive.classmate of collins who died two years ago. just before the prom, caleb's family and friends met the couple to remember and honor caleb >> i'm so grateful. that i can be here. for caleb and all his friends. just to be able -- i know i am not caleb but i am a little bit of him. >> caleb's parents say they miss their son dearly but feel like they have now gained a daughter. his organs and tissues have helped more than 70 people. >>> it will be a very happy mother's day for an oakland family. the twins were born premature and went home on the medical center in berkeley yesterday. the boys each weighed a little more than two pounds at birth when they were born at 26 weeks. they have been in the newborn intensive care unit for more than two months. miles and walter now weigh more th fane pounds apiece. their parents say they are happy and healthy. >> i just feel so much gratitude today. i don't even think that there are words to describe how grateful we feel. >> we first told you about the

for example, in in your family have the inherited disease you to try to change the dna whe like cystic fibrosis or something like that. so well reengineer humanity may be everybody should have gone terribly why is that the gene drive will not be a big worry because we produceonsf too slowly. >> what about the possibility of the genes changing themselves? >> soviet militiaman this still happening if even onel mosquitos shows up soon enroll replace all the dna then it will come back so the main concern is that will make said jean drive so could you take something we did not intend to have heardll that possibility laid out yet. >>host: we have to make it quick. >> caller: is ebola spread by mosquitoes? >> i don't think so. i believe it is bodily fluids. >>host: lead with warmer temperatures why not vaccines? >> bay has spent lot of money on vaccines but it is. hard to do so at that plaint it is happening before that becomes available. >>host: the extinction and invention of delegates foundation is behind this technology you can find it online baking for your time this morning [inaudible conversati

disease, you could try to change the dna of the embryos so they wouldn't have a, huntington's, cystic fibrosisthat's a whole different debate. the question is are we going to engineer humanity? as far as the spreading thing goes, the gene drive, that is not going to be a big worry and human just like it won't be a big worry and blue whales because we were reduced to slowly. too slowly. it will take millions of years for it to spread. and by then we will be able to undo that technology. dan on twitter at sign know about the possibility of the genes changing the house through replication errors. mutations occur over time . the genes could change. for scientists, the worry is mostly that three mutations their gene drive will stop working. the mosquitoes want to live. evolution is still happening. if you let loose one of these gene drive, if even one mosquito shows up that is resistant, that mosquito will survive and soon its dna will replace all of the other mosquitoes dna and the mosquitoes were combat. is that thecern mutations will make the gene drive not work. more questions i could it mutate

scientists hope to use crisper to treat diseases like cystic fibrosis to rare forms of blindness andpanies have been formed around these technologies. two went public this year. editas and i think it's almost doubled since it went public in february. and many others wanting to work in this technology as well. it is not yet in human testing. >> somatic tissue and germ cell tissue. so if you change it in a couple of cells. >> and delivery, getting to it a enough cells where it makes a difference. and. >> we've had people on in the past that were changing somatic -- by somatic i just mean a few of the cells in your body. you can change and in cases you can deliver enough of the protein that whatever deficiency it was it actually worked. it is hard to believe. that is the hard thing you are not going change the genes in all the cells of your body. you only change a few of them. >> changing essentially the entire genetic line is where this technology is incredibly controversial right now. >> molecular biology was so cool because of the way it works. the complementary sequences the way it