What a Pediatrician Learned from a 9-Year-Old Transgender Child
When Scientists Failed Them, Parents Unlocked Genetics of Kids’ Disease
How Music Helped Heal the Great Composers
At TEDMED, Human Drama Comes First. And That’s a Good Thing
Five Big Trends From This Week's TEDMED Gathering
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She has won several regional Emmy awards, a regional and a national Edward R. Murrow award. The Association for Health Journalists awarded Lesley best beat coverage. The Society of Professional Journalists has recognized her reporting several times. The Society of Environmental Journalists spotlighted her ongoing coverage of California's historic drought. \u003c/span>\u003cspan style=\"font-weight: 400;\">Before joining KQED in 2016, she covered food and sustainability for Capital Public Radio, the environment for Colorado Public Radio, and reported for both KUOW and KCTS9 in Seattle. \u003c/span>\u003cspan style=\"font-weight: 400;\">When not hunched over her laptop Lesley enjoys skiing with her toddler, surfing with her husband or scheming their next globetrotting adventure. Before motherhood she relished dancing tango till sunrise. 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Transgender patients are often unable to find quality health care. \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4802845/\" target=\"_blank\" rel=\"noopener\">Research\u003c/a> shows they may face stigma and discrimination, and that they can't find medical interventions like hormone therapy and/or sex reassignment surgery.\u003c/p>\n\u003caside class=\"alignright\">\n\u003ch3>Tell Us Your Story\u003c/h3>\n\u003cp>Are you a transgender person who has struggled to find appropriate care, or a doctor who has struggled to learn to provide care? \u003ca href=\"#health\">Tell us your story\u003c/a> in the question box at the bottom of this post. Your responses will be kept confidential and will not be shared without your permission.\u003c/p>\n\u003c/aside>\n\u003cp>Ximena Lopez is a pediatric endocrinologist at Children’s Health in Dallas, Texas, one of the few in the country who specialize in care for transgender youth. Recently she shared the story of her steep learning curve at the \u003ca href=\"http://www.tedmed.com/\">TEDMED\u003c/a> conference in Palm Springs.\u003c/p>\n\u003cp>I caught up with her afterward. The following interview, in Lopez's words, has been edited for length and clarity:\u003c/p>\n\u003cp>\u003cstrong>Parents Desperate for Help\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>I was not prepared when my first transgender child walked into my clinic. I didn’t get any training in medical school, my residency or my sub-specialty training to care for transgender children. And there were people in my clinic who questioned whether I should take the appointment. I decided to see whether I could help, but I didn't think I'd actually provide care.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>During the first appointment, the most striking thing was how desperate the parents were for help. They told me they had called 100 doctors and nobody wanted to provide treatment to stop Tyler's puberty. Then they said, 'We don't care if you experiment with our child. We will do anything for his mental health.'\u003c/p>\n\u003cp>They used a phrase that really stayed with me, 'We prefer to have a living son than a dead daughter.'\u003c/p>\n\u003cp>I knew I had to help.\u003c/p>\n\u003cp>\u003cstrong>[contextly_sidebar id=\"ypQ0S1VFkkumYcqXsE0vYCCbmOzMzDkc\"]Very Little Expertise Available\u003c/strong>\u003c/p>\n\u003cp>I went to the mental health team in my hospital for their expertise and they said, 'We have no experience whatsoever. The only time we've seen transgender patients is when they're trying to commit suicide and admitted to the psychiatric unit.'\u003c/p>\n\u003cp>Fortunately, I eventually found a specialist in Boston and a local psychiatrist to help me navigate suppressing Tyler's puberty.\u003c/p>\n\u003cp>Puberty suppression is a reversible step. It buys time to explore gender identity. So even if the child changed his or her mind later on, we could stop the puberty suppression and puberty will just restart.\u003c/p>\n\u003cp>\u003cb>It's Not a Choice\u003c/b>\u003c/p>\n\u003cp>Gender dysphoria is the conflict that exists when a person's physical or assigned gender is different than how they feel or identify. It's very clear that it's not a choice. That's what I've learned from my patients. Parents have been dealing with this for a long time. They've had years of denial -- mourning the child that they're losing, and then accepting the child they have.\u003c/p>\n\u003cp>When parents are not supportive the risk of suicide attempt can be as high as 60 percent. And when parents are very supportive it can be as low as 4 percent. The difference is just incredible, so parental support is more than critical.\u003c/p>\n\u003cp>Society should see transgender people as just normal people. I think we as humans tend to be afraid of what's different and what's new.\u003c/p>\n\u003cp>\u003cstrong>[contextly_sidebar id=\"3gWXSODBjp95u08FGWK1bohVUcxSPy5g\"]Biological Basis for Transgender Identity\u003c/strong>\u003c/p>\n\u003cp>There's very little known. There's no genetic explanation. We do know that 40 to 60 percent of identical twins are transgender. For example, if one identical twin is transgender, the odds of the other twin being transgender is 40 to 60 percent. That means there probably is a genetic link because that's a high prevalence. But it's not 100 percent. We don't know anything about the specific gene or genes.\u003c/p>\n\u003cp>The other thing is there is a new brain imaging study that is called a functional MRI (fMRI) that show subtle differences in movement in the brain between regular males and females. \u003ca href=\"http://scholar.google.com/scholar_url?url=https://www.researchgate.net/profile/Alicia_Garcia-Falgueras/publication/24377907_Sexual_differentiation_of_the_human_brain_in_relation_to_gender_identity_and_sexual_orientation/links/0046353982a9ca6d8e000000.pdf&hl=en&sa=X&scisig=AAGBfm19NmQGvQy8twJNvMaPYGD17MaCvg&nossl=1&oi=scholarr\" target=\"_blank\" rel=\"noopener\">Researchers\u003c/a> looked at transgender people before they received any hormone therapy or any treatment that could affect brain function or morphology, and transgender people have differences that put them more aligned with the gender they identify with. In other words, their brains are actually acting more like the brain that they identify with rather than their biological gender.\u003cbr>\n\u003ca name=\"health\">\u003c/a>\u003c/p>\n\u003ch2>Have you been able to find appropriate health care for your needs as a transgender person? Why or why not? Tell us your story; your responses will be kept confidential and will never be shared without your permission.\u003c/h2>\n\u003cp>[transgenderhealthcare]\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>Editor's Note: We will post Ximena Lopez's TEDMED talk here as soon as it is available.\u003c/em>\u003c/p>\n\n","blocks":[],"excerpt":"When Ximena Lopez received her first transgender child patient she had no idea how her life and practice would change. ","status":"publish","parent":0,"modified":1518032392,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":24,"wordCount":821},"headData":{"title":"What a Pediatrician Learned from a 9-Year-Old Transgender Child | KQED","description":"When Ximena Lopez received her first transgender child patient she had no idea how her life and practice would change. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"What a Pediatrician Learned from a 9-Year-Old Transgender Child","datePublished":"2018-02-05T08:01:11.000Z","dateModified":"2018-02-07T19:39:52.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"439151 https://ww2.kqed.org/futureofyou/?p=439151","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/02/05/what-a-pediatrician-learned-from-a-9-year-old-transgender-child/","disqusTitle":"What a Pediatrician Learned from a 9-Year-Old Transgender Child","source":"KQED Future of You","audioUrl":"https://www.kqed.org/.stream/anon/radio/science/2018/02/TransgenderforWEB.mp3","path":"/futureofyou/439151/what-a-pediatrician-learned-from-a-9-year-old-transgender-child","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>The number of transgender people in America has \u003ca href=\"http://williamsinstitute.law.ucla.edu/wp-content/uploads/How-Many-Adults-Identify-as-Transgender-in-the-United-States.pdf\" target=\"_blank\" rel=\"noopener\">doubled\u003c/a> in the last decade, but that doesn't mean the medical profession has caught up. Transgender patients are often unable to find quality health care. \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4802845/\" target=\"_blank\" rel=\"noopener\">Research\u003c/a> shows they may face stigma and discrimination, and that they can't find medical interventions like hormone therapy and/or sex reassignment surgery.\u003c/p>\n\u003caside class=\"alignright\">\n\u003ch3>Tell Us Your Story\u003c/h3>\n\u003cp>Are you a transgender person who has struggled to find appropriate care, or a doctor who has struggled to learn to provide care? \u003ca href=\"#health\">Tell us your story\u003c/a> in the question box at the bottom of this post. Your responses will be kept confidential and will not be shared without your permission.\u003c/p>\n\u003c/aside>\n\u003cp>Ximena Lopez is a pediatric endocrinologist at Children’s Health in Dallas, Texas, one of the few in the country who specialize in care for transgender youth. Recently she shared the story of her steep learning curve at the \u003ca href=\"http://www.tedmed.com/\">TEDMED\u003c/a> conference in Palm Springs.\u003c/p>\n\u003cp>I caught up with her afterward. The following interview, in Lopez's words, has been edited for length and clarity:\u003c/p>\n\u003cp>\u003cstrong>Parents Desperate for Help\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>I was not prepared when my first transgender child walked into my clinic. I didn’t get any training in medical school, my residency or my sub-specialty training to care for transgender children. And there were people in my clinic who questioned whether I should take the appointment. I decided to see whether I could help, but I didn't think I'd actually provide care.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>During the first appointment, the most striking thing was how desperate the parents were for help. They told me they had called 100 doctors and nobody wanted to provide treatment to stop Tyler's puberty. Then they said, 'We don't care if you experiment with our child. We will do anything for his mental health.'\u003c/p>\n\u003cp>They used a phrase that really stayed with me, 'We prefer to have a living son than a dead daughter.'\u003c/p>\n\u003cp>I knew I had to help.\u003c/p>\n\u003cp>\u003cstrong>\u003c/p>\u003cp>\u003c/p>\u003cp>Very Little Expertise Available\u003c/strong>\u003c/p>\n\u003cp>I went to the mental health team in my hospital for their expertise and they said, 'We have no experience whatsoever. The only time we've seen transgender patients is when they're trying to commit suicide and admitted to the psychiatric unit.'\u003c/p>\n\u003cp>Fortunately, I eventually found a specialist in Boston and a local psychiatrist to help me navigate suppressing Tyler's puberty.\u003c/p>\n\u003cp>Puberty suppression is a reversible step. It buys time to explore gender identity. So even if the child changed his or her mind later on, we could stop the puberty suppression and puberty will just restart.\u003c/p>\n\u003cp>\u003cb>It's Not a Choice\u003c/b>\u003c/p>\n\u003cp>Gender dysphoria is the conflict that exists when a person's physical or assigned gender is different than how they feel or identify. It's very clear that it's not a choice. That's what I've learned from my patients. Parents have been dealing with this for a long time. They've had years of denial -- mourning the child that they're losing, and then accepting the child they have.\u003c/p>\n\u003cp>When parents are not supportive the risk of suicide attempt can be as high as 60 percent. And when parents are very supportive it can be as low as 4 percent. The difference is just incredible, so parental support is more than critical.\u003c/p>\n\u003cp>Society should see transgender people as just normal people. I think we as humans tend to be afraid of what's different and what's new.\u003c/p>\n\u003cp>\u003cstrong>\u003c/p>\u003cp>\u003c/p>\u003cp>Biological Basis for Transgender Identity\u003c/strong>\u003c/p>\n\u003cp>There's very little known. There's no genetic explanation. We do know that 40 to 60 percent of identical twins are transgender. For example, if one identical twin is transgender, the odds of the other twin being transgender is 40 to 60 percent. That means there probably is a genetic link because that's a high prevalence. But it's not 100 percent. We don't know anything about the specific gene or genes.\u003c/p>\n\u003cp>The other thing is there is a new brain imaging study that is called a functional MRI (fMRI) that show subtle differences in movement in the brain between regular males and females. \u003ca href=\"http://scholar.google.com/scholar_url?url=https://www.researchgate.net/profile/Alicia_Garcia-Falgueras/publication/24377907_Sexual_differentiation_of_the_human_brain_in_relation_to_gender_identity_and_sexual_orientation/links/0046353982a9ca6d8e000000.pdf&hl=en&sa=X&scisig=AAGBfm19NmQGvQy8twJNvMaPYGD17MaCvg&nossl=1&oi=scholarr\" target=\"_blank\" rel=\"noopener\">Researchers\u003c/a> looked at transgender people before they received any hormone therapy or any treatment that could affect brain function or morphology, and transgender people have differences that put them more aligned with the gender they identify with. In other words, their brains are actually acting more like the brain that they identify with rather than their biological gender.\u003cbr>\n\u003ca name=\"health\">\u003c/a>\u003c/p>\n\u003ch2>Have you been able to find appropriate health care for your needs as a transgender person? Why or why not? Tell us your story; your responses will be kept confidential and will never be shared without your permission.\u003c/h2>\n\u003cp>[transgenderhealthcare]\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>Editor's Note: We will post Ximena Lopez's TEDMED talk here as soon as it is available.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/439151/what-a-pediatrician-learned-from-a-9-year-old-transgender-child","authors":["11229"],"categories":["futureofyou_1","futureofyou_73"],"tags":["futureofyou_1275","futureofyou_1244","futureofyou_685","futureofyou_80","futureofyou_656","futureofyou_1018"],"label":"source_futureofyou_439151"},"futureofyou_300937":{"type":"posts","id":"futureofyou_300937","meta":{"index":"posts_1591205157","site":"futureofyou","id":"300937","score":null,"sort":[1497965457000]},"guestAuthors":[],"slug":"when-scientists-failed-them-parents-unlocked-genetics-of-kids-disease","title":"When Scientists Failed Them, Parents Unlocked Genetics of Kids’ Disease","publishDate":1497965457,"format":"audio","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>\u003ciframe src=\"https://embed.ted.com/talks/sharon_terry_science_didn_t_understand_my_kids_rare_disease_until_i_decided_to_study_it\" width=\"640\" height=\"360\" frameborder=\"0\" scrolling=\"no\" webkitallowfullscreen mozallowfullscreen allowfullscreen>\u003c/iframe>\u003c/p>\n\u003cp>\u003cem>Update June 20, 2017:\u003c/em> The video of Sharon Terry's talk at TEDMED has been released.\u003c/p>\n\u003cp>In the mid-1990s, Sharon Terry learned that her two young children had a rare genetic disease called \u003ca href=\"https://ghr.nlm.nih.gov/condition/pseudoxanthoma-elasticum\">pseudoxanthoma elasticum\u003c/a>, also known as Grönblad–Strandberg syndrome and more commonly called PXE.\u003c/p>\n\u003cp>PXE is a slow progressive disease that hardens connective tissue, causing loose, wrinkly skin in the neck, under the arms, around the groin and behind the knees.\u003c/p>\n\u003cp>“There was a moment of just complete devastation that my two beautiful, perfect, wonderful children had a disease that I didn’t understand,” Terry says.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003cstrong>Disillusioned by Experts\u003c/strong>\u003c/p>\n\u003cp>The good news was that the Boston family had time. Terry’s five- and seven-year-old might look elderly by the time they were 20, but they had several years before the disease triggered severe aging, obscured their vision or impaired their blood vessels.\u003c/p>\n\u003caside class=\"pullquote alignright\">'We're going to get you to come to us, and play by our rules. And our rule is, ‘You have to share with other scientists.’ \u003ccite>Sharon Terry\u003c/cite>\u003c/aside>\n\u003cp>The bad news was that doctors and researchers knew very little about PXE, and the little they did wasn't being shared across labs. Terry watched, furious, as one group of researchers extracted vials of blood from her children’s arms, only to have a different team of scientists poke and prod her kids for a new set of samples a few days later.\u003c/p>\n\u003cp>“We saw, over and over, intense competition,” says Terry. “We had to figure out how to get these scientists to play with each other.”\u003c/p>\n\u003cp>[audio src=\"hhttp://www.kqed.org/.stream/anon/radio/science/2016/12/WEBGeneticSupermom161219.mp3\" title=\"Listen to the radio story\" program=\"Future of You\" image=\"https://ww2.kqed.org/science/wp-content/uploads/sites/35/2017/05/SciencePlayer_BG.jpeg\"]\u003c/p>\n\u003cp>\u003cstrong>'Take the Bull By the Horns'\u003c/strong>\u003c/p>\n\u003cp>The family took an unconventional approach to orchestrating their children’s care, especially given that neither parent had a background in science. Terry has a master’s degree in religious studies. She was a college chaplain before she became a full-time mom. Her husband is a construction manager with a concentration in drafting from a trade school.\u003c/p>\n\u003cfigure id=\"attachment_302165\" class=\"wp-caption alignleft\" style=\"max-width: 433px\">\u003cimg class=\"wp-image-302165\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/12/2005-800x540.jpg\" alt=\"Sister and brother Elizabeth and Ian Terry in 2005.\" width=\"433\" height=\"292\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/12/2005-800x540.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/2005-160x108.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/2005-768x518.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/2005-240x162.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/2005-375x253.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/2005-520x351.jpg 520w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/2005.jpg 900w\" sizes=\"(max-width: 433px) 100vw, 433px\">\u003cfigcaption class=\"wp-caption-text\">Sister and brother Elizabeth and Ian Terry in 2005. \u003ccite>(Sharon Terry)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"We decided that we had to take the bull by the horns and, first, learn what we could about the disease,\" Terry says. \"We quickly learned there really wasn't anything to learn about the disease.\"\u003c/p>\n\u003cp>Somehow the diligent couple convinced researchers at Harvard to lend them bench space to better understand the genetics driving PXE.\u003c/p>\n\u003cp>Every night the supermom and superdad spent six hours in a lab collecting blood and tissue samples, extracting DNA, and deciphering the code. Generous postdoctoral students tutored the couple until the wee hours of the morning. And, after a couple of years, Terry and her husband discovered the gene behind PXE.\u003c/p>\n\u003caside class=\"pullquote alignright\">'This year we actually have four different treatments that we think are going to be effective.'\u003ccite>Sharon Terry\u003c/cite>\u003c/aside>\n\u003cp>Eventually they built a diagnostic test and posted all of their data on an open online consortium, which Terry now runs, called \u003ca href=\"http://www.geneticalliance.org/advocacy\">Genetic Alliance\u003c/a>.\u003c/p>\n\u003cp>“Cats can be herded if you move their food,” says Terry. “And so we basically said the food is DNA and clinical histories. We're going to put that together, and we're going to get you to come to us, and play by our rules. And our rule is, ‘You have to share with other scientists.'\"\u003c/p>\n\u003cp>\u003cstrong>A Cure on the Horizon\u003c/strong>\u003c/p>\n\u003cp>Genetic Alliance offers a suite of tools to help other families who receive a devastating diagnosis. The advocacy organization offers advice on how to do scientific research, how to talk to kids about genetic disease and how to become an activist on Capitol Hill.\u003c/p>\n\u003cp>Terry’s children, now 27 and 29, are now closer to a cure than at any time since their diagnoses two decades ago.\u003c/p>\n\u003cp>“This year we actually have four different treatments that we think are going to be effective,” Terry says. “They've been effective in our mouse model. We're now looking at moving into human clinical trials for these treatments.”\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Terry hopes her story will inspire other families to take action when a doctor delivers crushing news. She recently shared her story on stage at the TEDMED health conference in Palm Springs.\u003c/p>\n\n","blocks":[],"excerpt":"With no background in science, these parents were able to identify the gene causing their childrens' rare disease.","status":"publish","parent":0,"modified":1520291651,"stats":{"hasAudio":true,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":23,"wordCount":759},"headData":{"title":"When Scientists Failed Them, Parents Unlocked Genetics of Kids’ Disease | KQED","description":"With no background in science, these parents were able to identify the gene causing their childrens' rare disease.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"When Scientists Failed Them, Parents Unlocked Genetics of Kids’ Disease","datePublished":"2017-06-20T13:30:57.000Z","dateModified":"2018-03-05T23:14:11.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"300937 http://ww2.kqed.org/futureofyou/?p=300937","disqusUrl":"https://ww2.kqed.org/futureofyou/2017/06/20/when-scientists-failed-them-parents-unlocked-genetics-of-kids-disease/","disqusTitle":"When Scientists Failed Them, Parents Unlocked Genetics of Kids’ Disease","audioUrl":"http://www.kqed.org/.stream/anon/radio/science/2016/12/WEBGeneticSupermom161219.mp3","customPermalink":"2016/12/16/when-scientists-failed-them-parents-unlocked-genetics-of-kids-disease/","path":"/futureofyou/300937/when-scientists-failed-them-parents-unlocked-genetics-of-kids-disease","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003ciframe src=\"https://embed.ted.com/talks/sharon_terry_science_didn_t_understand_my_kids_rare_disease_until_i_decided_to_study_it\" width=\"640\" height=\"360\" frameborder=\"0\" scrolling=\"no\" webkitallowfullscreen mozallowfullscreen allowfullscreen>\u003c/iframe>\u003c/p>\n\u003cp>\u003cem>Update June 20, 2017:\u003c/em> The video of Sharon Terry's talk at TEDMED has been released.\u003c/p>\n\u003cp>In the mid-1990s, Sharon Terry learned that her two young children had a rare genetic disease called \u003ca href=\"https://ghr.nlm.nih.gov/condition/pseudoxanthoma-elasticum\">pseudoxanthoma elasticum\u003c/a>, also known as Grönblad–Strandberg syndrome and more commonly called PXE.\u003c/p>\n\u003cp>PXE is a slow progressive disease that hardens connective tissue, causing loose, wrinkly skin in the neck, under the arms, around the groin and behind the knees.\u003c/p>\n\u003cp>“There was a moment of just complete devastation that my two beautiful, perfect, wonderful children had a disease that I didn’t understand,” Terry says.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>Disillusioned by Experts\u003c/strong>\u003c/p>\n\u003cp>The good news was that the Boston family had time. Terry’s five- and seven-year-old might look elderly by the time they were 20, but they had several years before the disease triggered severe aging, obscured their vision or impaired their blood vessels.\u003c/p>\n\u003caside class=\"pullquote alignright\">'We're going to get you to come to us, and play by our rules. And our rule is, ‘You have to share with other scientists.’ \u003ccite>Sharon Terry\u003c/cite>\u003c/aside>\n\u003cp>The bad news was that doctors and researchers knew very little about PXE, and the little they did wasn't being shared across labs. Terry watched, furious, as one group of researchers extracted vials of blood from her children’s arms, only to have a different team of scientists poke and prod her kids for a new set of samples a few days later.\u003c/p>\n\u003cp>“We saw, over and over, intense competition,” says Terry. “We had to figure out how to get these scientists to play with each other.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"audio","attributes":{"named":{"src":"hhttp://www.kqed.org/.stream/anon/radio/science/2016/12/WEBGeneticSupermom161219.mp3","title":"Listen to the radio story","program":"Future of You","image":"https://ww2.kqed.org/science/wp-content/uploads/sites/35/2017/05/SciencePlayer_BG.jpeg","label":""},"numeric":[]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>'Take the Bull By the Horns'\u003c/strong>\u003c/p>\n\u003cp>The family took an unconventional approach to orchestrating their children’s care, especially given that neither parent had a background in science. Terry has a master’s degree in religious studies. She was a college chaplain before she became a full-time mom. Her husband is a construction manager with a concentration in drafting from a trade school.\u003c/p>\n\u003cfigure id=\"attachment_302165\" class=\"wp-caption alignleft\" style=\"max-width: 433px\">\u003cimg class=\"wp-image-302165\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/12/2005-800x540.jpg\" alt=\"Sister and brother Elizabeth and Ian Terry in 2005.\" width=\"433\" height=\"292\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/12/2005-800x540.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/2005-160x108.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/2005-768x518.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/2005-240x162.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/2005-375x253.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/2005-520x351.jpg 520w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/2005.jpg 900w\" sizes=\"(max-width: 433px) 100vw, 433px\">\u003cfigcaption class=\"wp-caption-text\">Sister and brother Elizabeth and Ian Terry in 2005. \u003ccite>(Sharon Terry)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"We decided that we had to take the bull by the horns and, first, learn what we could about the disease,\" Terry says. \"We quickly learned there really wasn't anything to learn about the disease.\"\u003c/p>\n\u003cp>Somehow the diligent couple convinced researchers at Harvard to lend them bench space to better understand the genetics driving PXE.\u003c/p>\n\u003cp>Every night the supermom and superdad spent six hours in a lab collecting blood and tissue samples, extracting DNA, and deciphering the code. Generous postdoctoral students tutored the couple until the wee hours of the morning. And, after a couple of years, Terry and her husband discovered the gene behind PXE.\u003c/p>\n\u003caside class=\"pullquote alignright\">'This year we actually have four different treatments that we think are going to be effective.'\u003ccite>Sharon Terry\u003c/cite>\u003c/aside>\n\u003cp>Eventually they built a diagnostic test and posted all of their data on an open online consortium, which Terry now runs, called \u003ca href=\"http://www.geneticalliance.org/advocacy\">Genetic Alliance\u003c/a>.\u003c/p>\n\u003cp>“Cats can be herded if you move their food,” says Terry. “And so we basically said the food is DNA and clinical histories. We're going to put that together, and we're going to get you to come to us, and play by our rules. And our rule is, ‘You have to share with other scientists.'\"\u003c/p>\n\u003cp>\u003cstrong>A Cure on the Horizon\u003c/strong>\u003c/p>\n\u003cp>Genetic Alliance offers a suite of tools to help other families who receive a devastating diagnosis. The advocacy organization offers advice on how to do scientific research, how to talk to kids about genetic disease and how to become an activist on Capitol Hill.\u003c/p>\n\u003cp>Terry’s children, now 27 and 29, are now closer to a cure than at any time since their diagnoses two decades ago.\u003c/p>\n\u003cp>“This year we actually have four different treatments that we think are going to be effective,” Terry says. “They've been effective in our mouse model. We're now looking at moving into human clinical trials for these treatments.”\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Terry hopes her story will inspire other families to take action when a doctor delivers crushing news. She recently shared her story on stage at the TEDMED health conference in Palm Springs.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/300937/when-scientists-failed-them-parents-unlocked-genetics-of-kids-disease","authors":["11229"],"categories":["futureofyou_1060","futureofyou_1062","futureofyou_73","futureofyou_1064"],"tags":["futureofyou_141","futureofyou_1275","futureofyou_120","futureofyou_80","futureofyou_1148","futureofyou_656"],"featImg":"futureofyou_302164","label":"futureofyou"},"futureofyou_318247":{"type":"posts","id":"futureofyou_318247","meta":{"index":"posts_1591205157","site":"futureofyou","id":"318247","score":null,"sort":[1484578858000]},"guestAuthors":[],"slug":"how-music-channeled-the-mad-genius-of-great-composers","title":"How Music Helped Heal the Great Composers","publishDate":1484578858,"format":"audio","headTitle":"Future of You | KQED Future of You | KQED Science","labelTerm":{"term":54,"site":"futureofyou"},"content":"\u003cp>Many famous composers may have fended off madness through music. Robert Schumann, Pyotr Ilyich Tchaikovsky and Ludwig van Beethoven all suffered from psychiatric illness, but they were also some of the most talented legends of all time. There is a long history of mental illness in poets, performers and artists.\u003c/p>\n\u003caside class=\"pullquote alignright\">'I’m convinced that a modern day psychiatrist examining [Gershwin] would give him a diagnosis of conduct disorder and might diagnose him with ADHD.'\u003ccite>Dr. Richard Kogan, clinical psychiatrist\u003c/cite>\u003c/aside>\n\u003cp>Dr. Richard Kogan, a clinical psychiatrist at Weill Cornell Medical Center and a renowned concert pianist, has studied the biographies of many musicians to better understand how mental instability ignited creative genius, and how their passion healed internal chaos.\u003c/p>\n\u003cp>Kogan recently spoke at the \u003ca href=\"http://tedmed.com/\" target=\"_blank\">TEDMED\u003c/a> conference in Palm Springs. He opened his talk with the story of George Gershwin as an anxious young boy.\u003c/p>\n\u003cp>\u003cstrong>Lessons From 'Rhapsody in Blue'\u003c/strong>\u003c/p>\n\u003cp>“George Gershwin exhibited enormous behavioral problems,” explains Kogan. “He was involved in fistfights and he set fires. He had trouble in school. He was inattentive. He couldn't sit still in the classroom. I'm convinced that a modern day psychiatrist examining him would give him a diagnosis of conduct disorder and might diagnose him with ADHD (attention deficit hyperactivity disorder), and might have started him on one of the psycho-stimulant medications like Adderall or Ritalin.”\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>But Gershwin was not medicated, because ADHD drugs didn't exist in the early years of the 20th century. Instead, according to Kogan, it was music that eventually taught him how to focus.\u003c/p>\n\u003cp>When Gershwin heard the sounds of a violin at the age of 10, his wild mind was utterly transfixed. On the spot, the young boy decided to devote his life to the study of music.\u003c/p>\n\u003cp>“Music provided a sense of order for Gershwin,” says Kogan. “Even though he retained the hyperactivity for the rest of his life, he no longer had impulse control problems or attention deficit problems.\"\u003c/p>\n\u003cp>Gershwin listened to the world differently from most people. Many of his masterpieces were inspired by simple chaotic sounds. On a train ride from New York to Boston, the click-clack of the train along the tracks inspired the construction of \"Rhapsody in Blue.\" The sounds of Parisian taxi horns were foundational to the rhythm of \"American in Paris.\"\u003c/p>\n\u003cp>“I think his exposure to music unlocked something that none of his early school teachers or anybody in his family saw, which was that he had extraordinary creative potential,” says Kogan. “And music was the way it was expressed.”\u003c/p>\n\u003cp>\u003cstrong>The Roots of Music and Medicine\u003c/strong>\u003c/p>\n\u003cp>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/22169917\" target=\"_blank\">Research\u003c/a> highlights how music used to play a much more integral role in healing. Kogan points back to the Greek god Apollo, who was recognized as both the deity of music and medicine. In primitive cultures, shamans served as both musician\u003cem> and\u003c/em> physician. During the Middle Ages, convents within the Catholic Church offered healing through music. The \u003ca href=\"http://www.washingtontimes.com/news/2008/jun/25/chant-a-healing-art/\" target=\"_blank\">health benefits\u003c/a> of chanting in many cultures have been studied. But over time, the scientific approach to medicine has helped dissolve the relationship between music and healing. Kogan hopes that changes.\u003c/p>\n\u003cp>\"There are researchers who are doing impressive work now in demonstrating scientifically exactly what music does,\" Kogan says about groundbreaking work in neuroscience. \"And I think when the results are in I predict there's going to be an explosion in the use of music as a modality of healing.\"\u003c/p>\n\u003cp>\u003cstrong>Why Mania Ignites Inspiration \u003c/strong>\u003c/p>\n\u003cp>There are features of elevated moods associated with mental illness that are conducive to creativity. For example, when individuals with bipolar disorder are in a hypomanic state, they experience increased energy, playful imagination and a decreased need for sleep.\u003c/p>\n\u003cp>Kogan explains how music helped Beethoven fend off suicidal tendencies in the video below.\u003c/p>\n\u003cp>\u003ciframe width=\"640\" height=\"360\" src=\"https://www.youtube.com/embed/PDNhzfcNJqQ?feature=oembed\" frameborder=\"0\" allow=\"autoplay; encrypted-media\" allowfullscreen>\u003c/iframe>\u003c/p>\n\u003cp>\u003cspan class=\"st\">Frédéric François Chopin, the Polish composer and virtuoso pianist, suffered from temporal lobe epilepsy, which caused dark hallucinations of phantoms and corpses. These images likely contributed to his famed funeral march, Piano Sonata No. 2. \u003c/span>Kogan shares Chopin's story in the video below.\u003c/p>\n\u003cp>\u003ciframe width=\"640\" height=\"360\" src=\"https://www.youtube.com/embed/3XmmXKqx-Sc?feature=oembed\" frameborder=\"0\" allow=\"autoplay; encrypted-media\" allowfullscreen>\u003c/iframe>\u003c/p>\n\u003cp>However, Kogan cautions against the tendency to over-romanticize psychiatric illness.\u003c/p>\n\u003cp>“Individuals may be reluctant to comply with treatment recommendations because they don't want to give up the creative highs associated with their mania,” says Kogan. “Unfortunately, that mind state tends to be unstable and often rather destructive. Plus, most people who are depressed are too paralyzed to write a symphony. Most people who are psychotic are too disorganized to put together anything coherent. So I think the best clinicians appreciate the potential advantages of mental illness and try to work with it to ultimately enhance creativity.”\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>That's what many musical legends did without the use of pharmacology. For George Gershwin the creative realm not only provided relief, it made him better than well.\u003c/p>\n\n","blocks":[],"excerpt":"A clinical psychiatrist has studied the biographies of many mentally unstable musical legends to better understand how music can help heal the mind. ","status":"publish","parent":0,"modified":1484854682,"stats":{"hasAudio":false,"hasVideo":true,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":24,"wordCount":824},"headData":{"title":"How Music Helped Heal the Great Composers | KQED","description":"A clinical psychiatrist has studied the biographies of many mentally unstable musical legends to better understand how music can help heal the mind. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"How Music Helped Heal the Great Composers","datePublished":"2017-01-16T15:00:58.000Z","dateModified":"2017-01-19T19:38:02.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"318247 http://ww2.kqed.org/futureofyou/?p=318247","disqusUrl":"https://ww2.kqed.org/futureofyou/2017/01/16/how-music-channeled-the-mad-genius-of-great-composers/","disqusTitle":"How Music Helped Heal the Great Composers","audioUrl":"http://www.kqed.org/.stream/anon/radio/science/2017/01/WEBMusicAsMedicineMcClurg170116.mp3","customPermalink":"2017/01/16/How-Music-Helped-Heal-the-Great-Composers/","path":"/futureofyou/318247/how-music-channeled-the-mad-genius-of-great-composers","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Many famous composers may have fended off madness through music. Robert Schumann, Pyotr Ilyich Tchaikovsky and Ludwig van Beethoven all suffered from psychiatric illness, but they were also some of the most talented legends of all time. There is a long history of mental illness in poets, performers and artists.\u003c/p>\n\u003caside class=\"pullquote alignright\">'I’m convinced that a modern day psychiatrist examining [Gershwin] would give him a diagnosis of conduct disorder and might diagnose him with ADHD.'\u003ccite>Dr. Richard Kogan, clinical psychiatrist\u003c/cite>\u003c/aside>\n\u003cp>Dr. Richard Kogan, a clinical psychiatrist at Weill Cornell Medical Center and a renowned concert pianist, has studied the biographies of many musicians to better understand how mental instability ignited creative genius, and how their passion healed internal chaos.\u003c/p>\n\u003cp>Kogan recently spoke at the \u003ca href=\"http://tedmed.com/\" target=\"_blank\">TEDMED\u003c/a> conference in Palm Springs. He opened his talk with the story of George Gershwin as an anxious young boy.\u003c/p>\n\u003cp>\u003cstrong>Lessons From 'Rhapsody in Blue'\u003c/strong>\u003c/p>\n\u003cp>“George Gershwin exhibited enormous behavioral problems,” explains Kogan. “He was involved in fistfights and he set fires. He had trouble in school. He was inattentive. He couldn't sit still in the classroom. I'm convinced that a modern day psychiatrist examining him would give him a diagnosis of conduct disorder and might diagnose him with ADHD (attention deficit hyperactivity disorder), and might have started him on one of the psycho-stimulant medications like Adderall or Ritalin.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>But Gershwin was not medicated, because ADHD drugs didn't exist in the early years of the 20th century. Instead, according to Kogan, it was music that eventually taught him how to focus.\u003c/p>\n\u003cp>When Gershwin heard the sounds of a violin at the age of 10, his wild mind was utterly transfixed. On the spot, the young boy decided to devote his life to the study of music.\u003c/p>\n\u003cp>“Music provided a sense of order for Gershwin,” says Kogan. “Even though he retained the hyperactivity for the rest of his life, he no longer had impulse control problems or attention deficit problems.\"\u003c/p>\n\u003cp>Gershwin listened to the world differently from most people. Many of his masterpieces were inspired by simple chaotic sounds. On a train ride from New York to Boston, the click-clack of the train along the tracks inspired the construction of \"Rhapsody in Blue.\" The sounds of Parisian taxi horns were foundational to the rhythm of \"American in Paris.\"\u003c/p>\n\u003cp>“I think his exposure to music unlocked something that none of his early school teachers or anybody in his family saw, which was that he had extraordinary creative potential,” says Kogan. “And music was the way it was expressed.”\u003c/p>\n\u003cp>\u003cstrong>The Roots of Music and Medicine\u003c/strong>\u003c/p>\n\u003cp>\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/22169917\" target=\"_blank\">Research\u003c/a> highlights how music used to play a much more integral role in healing. Kogan points back to the Greek god Apollo, who was recognized as both the deity of music and medicine. In primitive cultures, shamans served as both musician\u003cem> and\u003c/em> physician. During the Middle Ages, convents within the Catholic Church offered healing through music. The \u003ca href=\"http://www.washingtontimes.com/news/2008/jun/25/chant-a-healing-art/\" target=\"_blank\">health benefits\u003c/a> of chanting in many cultures have been studied. But over time, the scientific approach to medicine has helped dissolve the relationship between music and healing. Kogan hopes that changes.\u003c/p>\n\u003cp>\"There are researchers who are doing impressive work now in demonstrating scientifically exactly what music does,\" Kogan says about groundbreaking work in neuroscience. \"And I think when the results are in I predict there's going to be an explosion in the use of music as a modality of healing.\"\u003c/p>\n\u003cp>\u003cstrong>Why Mania Ignites Inspiration \u003c/strong>\u003c/p>\n\u003cp>There are features of elevated moods associated with mental illness that are conducive to creativity. For example, when individuals with bipolar disorder are in a hypomanic state, they experience increased energy, playful imagination and a decreased need for sleep.\u003c/p>\n\u003cp>Kogan explains how music helped Beethoven fend off suicidal tendencies in the video below.\u003c/p>\n\u003cp>\u003ciframe width=\"640\" height=\"360\" src=\"https://www.youtube.com/embed/PDNhzfcNJqQ?feature=oembed\" frameborder=\"0\" allow=\"autoplay; encrypted-media\" allowfullscreen>\u003c/iframe>\u003c/p>\n\u003cp>\u003cspan class=\"st\">Frédéric François Chopin, the Polish composer and virtuoso pianist, suffered from temporal lobe epilepsy, which caused dark hallucinations of phantoms and corpses. These images likely contributed to his famed funeral march, Piano Sonata No. 2. \u003c/span>Kogan shares Chopin's story in the video below.\u003c/p>\n\u003cp>\u003ciframe width=\"640\" height=\"360\" src=\"https://www.youtube.com/embed/3XmmXKqx-Sc?feature=oembed\" frameborder=\"0\" allow=\"autoplay; encrypted-media\" allowfullscreen>\u003c/iframe>\u003c/p>\n\u003cp>However, Kogan cautions against the tendency to over-romanticize psychiatric illness.\u003c/p>\n\u003cp>“Individuals may be reluctant to comply with treatment recommendations because they don't want to give up the creative highs associated with their mania,” says Kogan. “Unfortunately, that mind state tends to be unstable and often rather destructive. Plus, most people who are depressed are too paralyzed to write a symphony. Most people who are psychotic are too disorganized to put together anything coherent. So I think the best clinicians appreciate the potential advantages of mental illness and try to work with it to ultimately enhance creativity.”\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>That's what many musical legends did without the use of pharmacology. For George Gershwin the creative realm not only provided relief, it made him better than well.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/318247/how-music-channeled-the-mad-genius-of-great-composers","authors":["11229"],"programs":["futureofyou_54"],"categories":["futureofyou_452","futureofyou_1062","futureofyou_1"],"tags":["futureofyou_161","futureofyou_1146","futureofyou_1162","futureofyou_656"],"featImg":"futureofyou_318248","label":"futureofyou_54"},"futureofyou_300317":{"type":"posts","id":"futureofyou_300317","meta":{"index":"posts_1591205157","site":"futureofyou","id":"300317","score":null,"sort":[1481833181000]},"guestAuthors":[],"slug":"at-tedmed-human-drama-comes-first-and-thats-a-good-thing","title":"At TEDMED, Human Drama Comes First. And That’s a Good Thing","publishDate":1481833181,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>Is it any surprise that Oxford Dictionaries has named \u003ca href=\"https://en.oxforddictionaries.com/word-of-the-year/word-of-the-year-2016\">post-truth\u003c/a> the 2016 word of the year?\u003c/p>\n\u003cp>Oxford says the word gained momentum after the Brexit vote and the American presidential election. It defines the adjective as \"relating to or denoting circumstances in which objective facts are less influential in shaping public opinion than appeals to emotion and personal belief.”\u003c/p>\n\u003cp>A widely cited post-election Buzzfeed \u003ca href=\"https://www.buzzfeed.com/craigsilverman/viral-fake-election-news-outperformed-real-news-on-facebook?utm_term=.is5qzqZ2ny#.exbMLMeNA7\">analysis\u003c/a> would seem to buttress the validity of that idea, by showing the wild social media success of fake news stories as compared to real ones.\u003c/p>\n\u003cp>So how does a science reporter like myself successfully relay information if so many people don’t care, necessarily, about its accuracy? (Or even if it's \u003ca href=\"https://en.wikipedia.org/wiki/Pizzagate_(conspiracy_theory)\">made up out of whole cloth\u003c/a>.) How do we get readers to pay attention to news that confronts erroneous but entrenched \u003ca href=\"http://www.pewinternet.org/2016/10/04/the-politics-of-climate/ps_2016-10-04_politics-of-climate_0-01/\" target=\"_blank\">beliefs\u003c/a>, when the \u003ca href=\"http://www.nytimes.com/2016/12/07/us/politics/scott-pruitt-epa-trump.html\" target=\"_blank\">people\u003c/a> filling the country's\u003ca href=\"http://www.politifact.com/truth-o-meter/statements/2016/jun/03/hillary-clinton/yes-donald-trump-did-call-climate-change-chinese-h/\" target=\"_blank\"> highest offices\u003c/a> ignore \u003ca href=\"http://climate.nasa.gov/scientific-consensus/\" target=\"_blank\">overwhelming evidence\u003c/a> to the contrary?\u003c/p>\n\u003cp>As you may imagine, these questions have fueled many conversations, not to mention entire meetings, in our newsroom of late.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003cb>Stirring Hearts\u003cbr>\n\u003c/b>\u003c/p>\n\u003cp>And that's where TEDMED comes in. \u003ca href=\"http://tedmed.com/\">TEDMED's\u003c/a> approach to its annual conference reminded me that part of the answer is to continue to tell true stories based on good science, but with a focus on \u003ci>people\u003c/i>. (\u003ca href=\"https://ww2.kqed.org/stateofhealth/2015/01/26/not-vaccinated-stay-home-from-school-says-marin-dad-of-leukemia-patient/\" target=\"_blank\">See here\u003c/a> for a good example from KQED's State of Health.)\u003c/p>\n\u003cp>A three-day event, TEDMED attracts a who’s who in medical innovation. When videos of the presentations go online, they typically receive between 500,000 to 1 million views. Last year’s \u003ca href=\"https://www.ted.com/talks/judson_brewer_a_simple_way_to_break_a_bad_habit\">talk\u003c/a> by psychiatrist Judson Brewer about a simple way to break a bad habit has drawn 5.6 million views and counting.\u003c/p>\n\u003cp>This year, when I wandered into a massive, dimly lit Palm Springs ballroom, decked out in plush couches and brightly colored velvet arm chairs, I thought I was cozying in for three days of speeches about gadgets and medical breakthroughs.\u003c/p>\n\u003cp>But that wasn’t the case. The speakers rarely discussed data, instead focusing on what was inspiring, memorable, and most importantly, personal. All of which is key if what you're communicating confronts entrenched beliefs that are unlikely to shift without engaging the heart as well as the brain.\u003c/p>\n\u003cp>\u003cb>Memorable Talks\u003c/b>\u003c/p>\n\u003cfigure id=\"attachment_300967\" class=\"wp-caption alignleft\" style=\"max-width: 315px\">\u003cimg class=\"wp-image-300967 \" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/12/emi.jpb_-800x532.jpg\" alt=\"Spoken word poet Emtithal “Emi” Mahmoud on stage at TEDMED at the La Quinta Resort in Palm Springs. \" width=\"315\" height=\"209\">\u003cfigcaption class=\"wp-caption-text\">Spoken word poet Emtithal “Emi” Mahmoud on stage at TEDMED at the La Quinta Resort in Palm Springs. \u003ccite>(TEDMED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The theme of the opening session was \u003ci>Invisible Threats\u003c/i>. I assumed that meant speeches about airborne viruses like Ebola or Zika. But instead, Emitithal “Emi” Mahmoud, a spoken word poet from Sudan, took the stage. She performed an intimate piece about the emotional toll of violence in her country. Yes there were plenty of audience tears.\u003c/p>\n\u003cp>“The invisible threats that we grapple with on a personal level, such as the biases that we hold or the traumas that we have gone through, but have not processed completely, affect how we influence and interact with other human beings,” Mahmoud told me after her performance. “Because in the long run, if you’re standing across from someone who needs help, and invisible barriers make you see them through a lens that makes you think they are not like you or they are an ‘other,’ chances are you are not going to help them. That’s incredibly dangerous.”\u003c/p>\n\u003cp>Over the course of the next few days, the speakers continued to share human stories that took the audience on surprising journeys all over the world.\u003c/p>\n\u003cfigure id=\"attachment_300975\" class=\"wp-caption alignleft\" style=\"max-width: 314px\">\u003cimg class=\" wp-image-300975\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/12/DSC_8921-900x600-800x533.jpg\" alt=\"Documentary filmmaker Carolyn Jones shared the story of Sister Stephens, a Wisconsin nurse who helps dying patients in their final days. \" width=\"314\" height=\"209\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/12/DSC_8921-900x600-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/DSC_8921-900x600-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/DSC_8921-900x600-768x512.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/DSC_8921-900x600-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/DSC_8921-900x600-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/DSC_8921-900x600-520x347.jpg 520w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/DSC_8921-900x600.jpg 900w\" sizes=\"(max-width: 314px) 100vw, 314px\">\u003cfigcaption class=\"wp-caption-text\">Documentary filmmaker Carolyn Jones shared the story of Sister Stephens, a Wisconsin nurse who helps dying patients in their final days. \u003ccite>(TEDMED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Documentary filmmaker Carolyn Jones highlighted the undervalued role nurses play in the health care industry. She shared the story of Sister Stephens, a Wisconsin nurse who runs an unusual nursing home. \"She uses ducks, goats and lambs for animal therapy with the residents who might not be able to remember their own name, but can rejoice in holding a baby lamb,\" Jones reported.\u003c/p>\n\u003cfigure id=\"attachment_300973\" class=\"wp-caption alignleft\" style=\"max-width: 314px\">\u003cimg class=\"wp-image-300973\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/12/cheryl-800x533.jpg\" alt=\"Prison psychologist Cheryl Steed shares inmate Mr. Burdick's story to illustrate how helping others can rehabilitate hardened criminals. \" width=\"314\" height=\"210\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-768x512.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-1920x1280.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-1180x787.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-960x640.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-520x347.jpg 520w\" sizes=\"(max-width: 314px) 100vw, 314px\">\u003cfigcaption class=\"wp-caption-text\">Prison psychologist Cheryl Steed shares inmate Mr. Burdick's story to illustrate how helping others can rehabilitate hardened criminals. \u003ccite>(TEDMED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Prison psychologist Cheryl Steed revealed a unique rehabilitation program called the Gold Coats. Physically able inmates, wearing gold jackets, take care of older convicts who are struggling with dementia. She told the story of Mr. Burdick, incarcerated for 40 years, who helps elderly inmates shower, dress and eat daily. \"Society at large tends to reduce people to labels – criminal, thief, killer...\" Steed said. \"How do you explain the fact that a man who once took a life is now a caregiver? Which version of that person is the truth? The beautiful complexity of human nature is that \u003ci>both\u003c/i> are true. And by shouldering responsibility for someone who needs them, these men have begun to discover another way of life and a healthier, happier version of themselves.\"\u003c/p>\n\u003cfigure id=\"attachment_300974\" class=\"wp-caption alignleft\" style=\"max-width: 314px\">\u003cimg class=\" wp-image-300974\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/12/lauren-800x533.jpg\" alt=\"New Yorker writer Larissa MacFarquhar explores the lives of extreme altruists. \" width=\"314\" height=\"209\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/12/lauren-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/lauren-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/lauren-768x512.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/lauren-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/lauren-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/lauren-520x347.jpg 520w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/lauren.jpg 900w\" sizes=\"(max-width: 314px) 100vw, 314px\">\u003cfigcaption class=\"wp-caption-text\">New Yorker writer Larissa MacFarquhar explores the lives of extreme altruists. \u003ccite>(TEDMED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>New Yorker writer Larissa MacFarquhar shared her research on the motivations behind altruism. She told the heroic tale of the Badeau family, a couple who kept adopting foster care children until they were housing 20 special needs kids. \"The thing about people like Sue and Hector is that they have a deep and happy sense of purpose,\" said MacFarquhar. \"Yes, they sacrifice a lot of comforts. But in exchange they know that they’ve changed many lives for the better, and they believe that they are living their own lives as they ought to. And how many of us can say that?\"\u003c/p>\n\u003cp>Even more traditional talks like psychiatrist Kafui Dzirasa’s use of neuroelectrical stimulation to treat mental illness, or Israeli internist Nir Barzilai’s research on extending life revolved around personal narratives that tugged at the audience’s emotions.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>Data and good research is a prerequisite for any science reporting. But TEDMED's speakers reminded me that communicating science, in an era where accurate information must compete with agenda- or profit-driven \"news,\" is not necessarily about driving home the numbers that scientists prize. Translating those numbers into stories of people who are actually affected by what they represent is what ultimately will move people to take science seriously.\u003c/p>\n\n","blocks":[],"excerpt":"At the annual gathering of medical innovators, presenters focus more on emotional narratives than data. But that can be an effective way to get scientific ideas across.","status":"publish","parent":0,"modified":1484175438,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":21,"wordCount":1074},"headData":{"title":"At TEDMED, Human Drama Comes First. And That’s a Good Thing | KQED","description":"At the annual gathering of medical innovators, presenters focus more on emotional narratives than data. But that can be an effective way to get scientific ideas across.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"At TEDMED, Human Drama Comes First. And That’s a Good Thing","datePublished":"2016-12-15T20:19:41.000Z","dateModified":"2017-01-11T22:57:18.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"300317 http://ww2.kqed.org/futureofyou/?p=300317","disqusUrl":"https://ww2.kqed.org/futureofyou/2016/12/15/at-tedmed-human-drama-comes-first-and-thats-a-good-thing/","disqusTitle":"At TEDMED, Human Drama Comes First. And That’s a Good Thing","path":"/futureofyou/300317/at-tedmed-human-drama-comes-first-and-thats-a-good-thing","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Is it any surprise that Oxford Dictionaries has named \u003ca href=\"https://en.oxforddictionaries.com/word-of-the-year/word-of-the-year-2016\">post-truth\u003c/a> the 2016 word of the year?\u003c/p>\n\u003cp>Oxford says the word gained momentum after the Brexit vote and the American presidential election. It defines the adjective as \"relating to or denoting circumstances in which objective facts are less influential in shaping public opinion than appeals to emotion and personal belief.”\u003c/p>\n\u003cp>A widely cited post-election Buzzfeed \u003ca href=\"https://www.buzzfeed.com/craigsilverman/viral-fake-election-news-outperformed-real-news-on-facebook?utm_term=.is5qzqZ2ny#.exbMLMeNA7\">analysis\u003c/a> would seem to buttress the validity of that idea, by showing the wild social media success of fake news stories as compared to real ones.\u003c/p>\n\u003cp>So how does a science reporter like myself successfully relay information if so many people don’t care, necessarily, about its accuracy? (Or even if it's \u003ca href=\"https://en.wikipedia.org/wiki/Pizzagate_(conspiracy_theory)\">made up out of whole cloth\u003c/a>.) How do we get readers to pay attention to news that confronts erroneous but entrenched \u003ca href=\"http://www.pewinternet.org/2016/10/04/the-politics-of-climate/ps_2016-10-04_politics-of-climate_0-01/\" target=\"_blank\">beliefs\u003c/a>, when the \u003ca href=\"http://www.nytimes.com/2016/12/07/us/politics/scott-pruitt-epa-trump.html\" target=\"_blank\">people\u003c/a> filling the country's\u003ca href=\"http://www.politifact.com/truth-o-meter/statements/2016/jun/03/hillary-clinton/yes-donald-trump-did-call-climate-change-chinese-h/\" target=\"_blank\"> highest offices\u003c/a> ignore \u003ca href=\"http://climate.nasa.gov/scientific-consensus/\" target=\"_blank\">overwhelming evidence\u003c/a> to the contrary?\u003c/p>\n\u003cp>As you may imagine, these questions have fueled many conversations, not to mention entire meetings, in our newsroom of late.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cb>Stirring Hearts\u003cbr>\n\u003c/b>\u003c/p>\n\u003cp>And that's where TEDMED comes in. \u003ca href=\"http://tedmed.com/\">TEDMED's\u003c/a> approach to its annual conference reminded me that part of the answer is to continue to tell true stories based on good science, but with a focus on \u003ci>people\u003c/i>. (\u003ca href=\"https://ww2.kqed.org/stateofhealth/2015/01/26/not-vaccinated-stay-home-from-school-says-marin-dad-of-leukemia-patient/\" target=\"_blank\">See here\u003c/a> for a good example from KQED's State of Health.)\u003c/p>\n\u003cp>A three-day event, TEDMED attracts a who’s who in medical innovation. When videos of the presentations go online, they typically receive between 500,000 to 1 million views. Last year’s \u003ca href=\"https://www.ted.com/talks/judson_brewer_a_simple_way_to_break_a_bad_habit\">talk\u003c/a> by psychiatrist Judson Brewer about a simple way to break a bad habit has drawn 5.6 million views and counting.\u003c/p>\n\u003cp>This year, when I wandered into a massive, dimly lit Palm Springs ballroom, decked out in plush couches and brightly colored velvet arm chairs, I thought I was cozying in for three days of speeches about gadgets and medical breakthroughs.\u003c/p>\n\u003cp>But that wasn’t the case. The speakers rarely discussed data, instead focusing on what was inspiring, memorable, and most importantly, personal. All of which is key if what you're communicating confronts entrenched beliefs that are unlikely to shift without engaging the heart as well as the brain.\u003c/p>\n\u003cp>\u003cb>Memorable Talks\u003c/b>\u003c/p>\n\u003cfigure id=\"attachment_300967\" class=\"wp-caption alignleft\" style=\"max-width: 315px\">\u003cimg class=\"wp-image-300967 \" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/12/emi.jpb_-800x532.jpg\" alt=\"Spoken word poet Emtithal “Emi” Mahmoud on stage at TEDMED at the La Quinta Resort in Palm Springs. \" width=\"315\" height=\"209\">\u003cfigcaption class=\"wp-caption-text\">Spoken word poet Emtithal “Emi” Mahmoud on stage at TEDMED at the La Quinta Resort in Palm Springs. \u003ccite>(TEDMED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The theme of the opening session was \u003ci>Invisible Threats\u003c/i>. I assumed that meant speeches about airborne viruses like Ebola or Zika. But instead, Emitithal “Emi” Mahmoud, a spoken word poet from Sudan, took the stage. She performed an intimate piece about the emotional toll of violence in her country. Yes there were plenty of audience tears.\u003c/p>\n\u003cp>“The invisible threats that we grapple with on a personal level, such as the biases that we hold or the traumas that we have gone through, but have not processed completely, affect how we influence and interact with other human beings,” Mahmoud told me after her performance. “Because in the long run, if you’re standing across from someone who needs help, and invisible barriers make you see them through a lens that makes you think they are not like you or they are an ‘other,’ chances are you are not going to help them. That’s incredibly dangerous.”\u003c/p>\n\u003cp>Over the course of the next few days, the speakers continued to share human stories that took the audience on surprising journeys all over the world.\u003c/p>\n\u003cfigure id=\"attachment_300975\" class=\"wp-caption alignleft\" style=\"max-width: 314px\">\u003cimg class=\" wp-image-300975\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/12/DSC_8921-900x600-800x533.jpg\" alt=\"Documentary filmmaker Carolyn Jones shared the story of Sister Stephens, a Wisconsin nurse who helps dying patients in their final days. \" width=\"314\" height=\"209\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/12/DSC_8921-900x600-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/DSC_8921-900x600-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/DSC_8921-900x600-768x512.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/DSC_8921-900x600-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/DSC_8921-900x600-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/DSC_8921-900x600-520x347.jpg 520w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/DSC_8921-900x600.jpg 900w\" sizes=\"(max-width: 314px) 100vw, 314px\">\u003cfigcaption class=\"wp-caption-text\">Documentary filmmaker Carolyn Jones shared the story of Sister Stephens, a Wisconsin nurse who helps dying patients in their final days. \u003ccite>(TEDMED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Documentary filmmaker Carolyn Jones highlighted the undervalued role nurses play in the health care industry. She shared the story of Sister Stephens, a Wisconsin nurse who runs an unusual nursing home. \"She uses ducks, goats and lambs for animal therapy with the residents who might not be able to remember their own name, but can rejoice in holding a baby lamb,\" Jones reported.\u003c/p>\n\u003cfigure id=\"attachment_300973\" class=\"wp-caption alignleft\" style=\"max-width: 314px\">\u003cimg class=\"wp-image-300973\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/12/cheryl-800x533.jpg\" alt=\"Prison psychologist Cheryl Steed shares inmate Mr. Burdick's story to illustrate how helping others can rehabilitate hardened criminals. \" width=\"314\" height=\"210\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-768x512.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-1920x1280.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-1180x787.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-960x640.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/cheryl-520x347.jpg 520w\" sizes=\"(max-width: 314px) 100vw, 314px\">\u003cfigcaption class=\"wp-caption-text\">Prison psychologist Cheryl Steed shares inmate Mr. Burdick's story to illustrate how helping others can rehabilitate hardened criminals. \u003ccite>(TEDMED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Prison psychologist Cheryl Steed revealed a unique rehabilitation program called the Gold Coats. Physically able inmates, wearing gold jackets, take care of older convicts who are struggling with dementia. She told the story of Mr. Burdick, incarcerated for 40 years, who helps elderly inmates shower, dress and eat daily. \"Society at large tends to reduce people to labels – criminal, thief, killer...\" Steed said. \"How do you explain the fact that a man who once took a life is now a caregiver? Which version of that person is the truth? The beautiful complexity of human nature is that \u003ci>both\u003c/i> are true. And by shouldering responsibility for someone who needs them, these men have begun to discover another way of life and a healthier, happier version of themselves.\"\u003c/p>\n\u003cfigure id=\"attachment_300974\" class=\"wp-caption alignleft\" style=\"max-width: 314px\">\u003cimg class=\" wp-image-300974\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/12/lauren-800x533.jpg\" alt=\"New Yorker writer Larissa MacFarquhar explores the lives of extreme altruists. \" width=\"314\" height=\"209\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/12/lauren-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/lauren-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/lauren-768x512.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/lauren-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/lauren-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/lauren-520x347.jpg 520w, https://ww2.kqed.org/app/uploads/sites/13/2016/12/lauren.jpg 900w\" sizes=\"(max-width: 314px) 100vw, 314px\">\u003cfigcaption class=\"wp-caption-text\">New Yorker writer Larissa MacFarquhar explores the lives of extreme altruists. \u003ccite>(TEDMED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>New Yorker writer Larissa MacFarquhar shared her research on the motivations behind altruism. She told the heroic tale of the Badeau family, a couple who kept adopting foster care children until they were housing 20 special needs kids. \"The thing about people like Sue and Hector is that they have a deep and happy sense of purpose,\" said MacFarquhar. \"Yes, they sacrifice a lot of comforts. But in exchange they know that they’ve changed many lives for the better, and they believe that they are living their own lives as they ought to. And how many of us can say that?\"\u003c/p>\n\u003cp>Even more traditional talks like psychiatrist Kafui Dzirasa’s use of neuroelectrical stimulation to treat mental illness, or Israeli internist Nir Barzilai’s research on extending life revolved around personal narratives that tugged at the audience’s emotions.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Data and good research is a prerequisite for any science reporting. But TEDMED's speakers reminded me that communicating science, in an era where accurate information must compete with agenda- or profit-driven \"news,\" is not necessarily about driving home the numbers that scientists prize. Translating those numbers into stories of people who are actually affected by what they represent is what ultimately will move people to take science seriously.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/300317/at-tedmed-human-drama-comes-first-and-thats-a-good-thing","authors":["11229"],"categories":["futureofyou_452","futureofyou_1062","futureofyou_1","futureofyou_73","futureofyou_1061"],"tags":["futureofyou_459","futureofyou_80","futureofyou_294","futureofyou_656"],"featImg":"futureofyou_300972","label":"futureofyou"},"futureofyou_66993":{"type":"posts","id":"futureofyou_66993","meta":{"index":"posts_1591205157","site":"futureofyou","id":"66993","score":null,"sort":[1447866042000]},"guestAuthors":[],"slug":"five-big-trends-from-this-weeks-tedmed-gathering","title":"Five Big Trends From This Week's TEDMED Gathering","publishDate":1447866042,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>I am addicted to \u003ca href=\"https://www.ted.com/\">TED\u003c/a> talks. They breath new life into what was once the boring lecture.\u003c/p>\n\u003cp>Some of the smartest people have now become some of the most inspirational, thanks to the TED format and delivery. TED is now its own global industry which includes smaller, more affordable, TED X talks, a TED video channel and \u003ca href=\"http://www.npr.org/programs/ted-radio-hour/?showDate=2015-11-13\">NPR's TED Radio Hour\u003c/a>.\u003c/p>\n\u003cp>\u003ca href=\"http://tedmed.com\">TEDMED\u003c/a>\u003ca href=\"http://www.tedmed.com/\">,\u003c/a> which is kind of the sci-fi edge of medicine, is one of the biggest gatherings in the TED culture.\u003c/p>\n\u003cp>This year's conference, which begins today in Palm Springs, is a who's who in medical innovation. The list includes several people we interviewed for KQED stories, including \u003ca href=\"http://ww2.kqed.org/futureofyou/2015/04/10/23andme-ceo-we-are-now-the-poster-child-for-patient-empowerment/\">consumer genetics guru Anne Wojcicki,\u003c/a> scientists from UCSF's genome editing project \u003ca href=\"http://ww2.kqed.org/futureofyou/2015/03/16/a-crispr-solution-to-bubble-boy-disease/\">Crispr\u003c/a>, and \u003ca href=\"http://ww2.kqed.org/futureofyou/2015/04/14/digital-tools-for-health-come-with-hope-hype-and-harm/\">physicians specializing in mobile health\u003c/a>.\u003c/p>\n\u003cp>There are also a number of speakers that are new to me. Here are five topics that caught my eye.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003cstrong>MakerNurse co-founder Anna Young\u003c/strong>\u003c/p>\n\u003cp>Inventive nurses have been doing workarounds for decades, cobbling together broken medical devices or adapting a dressing for a tiny patient's wound. Think about it: Who really knows more about how to improve patient care than the person who is at their bedside every day? I initially heard about MakerNurse at a conference last year, so I am looking forward to meeting Anna Young and her team from MIT's Little Device's Lab. They are using the ideas behind the Maker Movement to help bring rapid prototyping of tools to patient care.\u003c/p>\n\u003cp>[youtube https://www.youtube.com/watch?v=VkKjW9GdAaw]\u003c/p>\n\u003cp>\u003cstrong>UCSD sensor innovator Todd Coleman\u003c/strong>\u003c/p>\n\u003cp>Todd Coleman is a UC San Diego Bioengineering Professor who develops tattoos for health monitoring in order to make medicine less invasive. He is also a staunch public health advocate who is looking for ways to deliver sustainable innovations to under-served groups. Click\u003ca href=\"http://ww2.kqed.org/futureofyou/2015/06/30/this-smart-pen-could-revolutionize-diabetes-treatment/\"> here\u003c/a> for our recent story on KQED's Future of You about the use of 'smart tattoos' to revolutionize diabetes treatment.\u003c/p>\n\u003cp>[youtube https://www.youtube.com/watch?v=nym1leyltpU]\u003c/p>\n\u003cp>\u003cstrong>Bioengineer Sangeeta Bhatia\u003c/strong>\u003c/p>\n\u003cp>Sangeeta Bhatia is both a trained engineer and physician -- a rare combination. In her lab at MIT she works with technologies from the computer industry, like semiconductors, to figure out how to make livers for off-the-shelf transplants that don't depend on a dying patient's donation. Her team has developed breakthroughs in cancer treatment and Fast Company named her one of the most creative people of 2014.\u003c/p>\n\u003cp>[youtube https://www.youtube.com/watch?v=EZYeb1fw1qI]\u003c/p>\n\u003cp>\u003cstrong>Electrified Biogeochemist Kenneth Nealson\u003c/strong>\u003c/p>\n\u003cp>What is an electrified biogeochemist? Just the title is enough to peak my interest for this session.\u003c/p>\n\u003cp>[youtube https://www.youtube.com/watch?v=Y_-ImKe61I4]\u003c/p>\n\u003cp>\u003cstrong>Microbiome researcher Chris Mason \u003c/strong>\u003c/p>\n\u003cp>Chris Mason is \u003ca href=\"http://www.wsj.com/articles/scientists-back-off-some-findings-in-nyc-subway-microbiome-study-1438626750\">best known for his recent project\u003c/a> to map the New York subway's DNA, which took more than a year to complete. But Mason's interests go beyond swabbing subway trains and urban mircrobiology. His research extends to cruise ships, Chernobyl-struck villages and outer space. The Cornell professor is currently working with NASA on a long-term survival plan for interplanetary survival.\u003c/p>\n\u003cp>[youtube https://www.youtube.com/watch?v=mn5MkKXtxms]\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>You can follow the conference at #TedMed and @andreakissack. All talks will be available on the \u003ca href=\"http://tedmed.com\">TEDMED\u003c/a> site after the conference\u003c/em>.\u003c/p>\n\n","blocks":[],"excerpt":"More than eight hundred people, and thousands more remotely, are heading to Palm Springs for TedMed, the annual series of Ted talks on health, medicine and innovation. We will tell you what sparks our interest.","status":"publish","parent":0,"modified":1448842014,"stats":{"hasAudio":false,"hasVideo":true,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":23,"wordCount":579},"headData":{"title":"Five Big Trends From This Week's TEDMED Gathering | KQED","description":"More than eight hundred people, and thousands more remotely, are heading to Palm Springs for TedMed, the annual series of Ted talks on health, medicine and innovation. We will tell you what sparks our interest.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Five Big Trends From This Week's TEDMED Gathering","datePublished":"2015-11-18T17:00:42.000Z","dateModified":"2015-11-30T00:06:54.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"66993 http://ww2.kqed.org/futureofyou/?p=66993","disqusUrl":"https://ww2.kqed.org/futureofyou/2015/11/18/five-big-trends-from-this-weeks-tedmed-gathering/","disqusTitle":"Five Big Trends From This Week's TEDMED Gathering","path":"/futureofyou/66993/five-big-trends-from-this-weeks-tedmed-gathering","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>I am addicted to \u003ca href=\"https://www.ted.com/\">TED\u003c/a> talks. They breath new life into what was once the boring lecture.\u003c/p>\n\u003cp>Some of the smartest people have now become some of the most inspirational, thanks to the TED format and delivery. TED is now its own global industry which includes smaller, more affordable, TED X talks, a TED video channel and \u003ca href=\"http://www.npr.org/programs/ted-radio-hour/?showDate=2015-11-13\">NPR's TED Radio Hour\u003c/a>.\u003c/p>\n\u003cp>\u003ca href=\"http://tedmed.com\">TEDMED\u003c/a>\u003ca href=\"http://www.tedmed.com/\">,\u003c/a> which is kind of the sci-fi edge of medicine, is one of the biggest gatherings in the TED culture.\u003c/p>\n\u003cp>This year's conference, which begins today in Palm Springs, is a who's who in medical innovation. The list includes several people we interviewed for KQED stories, including \u003ca href=\"http://ww2.kqed.org/futureofyou/2015/04/10/23andme-ceo-we-are-now-the-poster-child-for-patient-empowerment/\">consumer genetics guru Anne Wojcicki,\u003c/a> scientists from UCSF's genome editing project \u003ca href=\"http://ww2.kqed.org/futureofyou/2015/03/16/a-crispr-solution-to-bubble-boy-disease/\">Crispr\u003c/a>, and \u003ca href=\"http://ww2.kqed.org/futureofyou/2015/04/14/digital-tools-for-health-come-with-hope-hype-and-harm/\">physicians specializing in mobile health\u003c/a>.\u003c/p>\n\u003cp>There are also a number of speakers that are new to me. Here are five topics that caught my eye.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>MakerNurse co-founder Anna Young\u003c/strong>\u003c/p>\n\u003cp>Inventive nurses have been doing workarounds for decades, cobbling together broken medical devices or adapting a dressing for a tiny patient's wound. Think about it: Who really knows more about how to improve patient care than the person who is at their bedside every day? I initially heard about MakerNurse at a conference last year, so I am looking forward to meeting Anna Young and her team from MIT's Little Device's Lab. They are using the ideas behind the Maker Movement to help bring rapid prototyping of tools to patient care.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/VkKjW9GdAaw'\n title='//www.youtube.com/embed/VkKjW9GdAaw'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003c/p>\n\u003cp>\u003cstrong>UCSD sensor innovator Todd Coleman\u003c/strong>\u003c/p>\n\u003cp>Todd Coleman is a UC San Diego Bioengineering Professor who develops tattoos for health monitoring in order to make medicine less invasive. He is also a staunch public health advocate who is looking for ways to deliver sustainable innovations to under-served groups. Click\u003ca href=\"http://ww2.kqed.org/futureofyou/2015/06/30/this-smart-pen-could-revolutionize-diabetes-treatment/\"> here\u003c/a> for our recent story on KQED's Future of You about the use of 'smart tattoos' to revolutionize diabetes treatment.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/nym1leyltpU'\n title='//www.youtube.com/embed/nym1leyltpU'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003c/p>\n\u003cp>\u003cstrong>Bioengineer Sangeeta Bhatia\u003c/strong>\u003c/p>\n\u003cp>Sangeeta Bhatia is both a trained engineer and physician -- a rare combination. In her lab at MIT she works with technologies from the computer industry, like semiconductors, to figure out how to make livers for off-the-shelf transplants that don't depend on a dying patient's donation. Her team has developed breakthroughs in cancer treatment and Fast Company named her one of the most creative people of 2014.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/EZYeb1fw1qI'\n title='//www.youtube.com/embed/EZYeb1fw1qI'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003c/p>\n\u003cp>\u003cstrong>Electrified Biogeochemist Kenneth Nealson\u003c/strong>\u003c/p>\n\u003cp>What is an electrified biogeochemist? Just the title is enough to peak my interest for this session.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/Y_-ImKe61I4'\n title='//www.youtube.com/embed/Y_-ImKe61I4'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003c/p>\n\u003cp>\u003cstrong>Microbiome researcher Chris Mason \u003c/strong>\u003c/p>\n\u003cp>Chris Mason is \u003ca href=\"http://www.wsj.com/articles/scientists-back-off-some-findings-in-nyc-subway-microbiome-study-1438626750\">best known for his recent project\u003c/a> to map the New York subway's DNA, which took more than a year to complete. But Mason's interests go beyond swabbing subway trains and urban mircrobiology. His research extends to cruise ships, Chernobyl-struck villages and outer space. The Cornell professor is currently working with NASA on a long-term survival plan for interplanetary survival.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/mn5MkKXtxms'\n title='//www.youtube.com/embed/mn5MkKXtxms'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>You can follow the conference at #TedMed and @andreakissack. All talks will be available on the \u003ca href=\"http://tedmed.com\">TEDMED\u003c/a> site after the conference\u003c/em>.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/66993/five-big-trends-from-this-weeks-tedmed-gathering","authors":["212"],"categories":["futureofyou_1"],"tags":["futureofyou_657","futureofyou_660","futureofyou_659","futureofyou_80","futureofyou_661","futureofyou_656","futureofyou_658"],"featImg":"futureofyou_66994","label":"futureofyou"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. 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