Q&A with Sian Leah Beilock, Performance Under Pressure Sage

Sian Leah Beilock is exploring the science behind why people “choke” in pressure-packed situations. Specifically, she examines factors in the brain and body that influence performance, in stressful situations ranging from test taking, to public speaking, to sporting events. Using a variety of research methods, including assessing test performance to neuroimaging techniques, Sian’s work is aimed at better understanding how our cognition and reasoning skills change when we are under stress. Sian’s research is routinely covered in the media, including CNN, NPR, The New York Times, and The Wall Street Journal. In 2017, the National Academy of Sciences honored Sian with the Troland Award, in recognition of her pioneering work in experimental psychology. Sian has published two books and over 100 papers though her research. After serving as Executive Vice Provost of the University of Chicago, Sian was recently appointed as the eighth President of Barnard College. She spoke at TEDMED 2017, and you can watch her Talk here.


TEDMED: You were an athlete growing up, and in your talk you speak a lot about the pressures that athletes feel when it’s game time. How do you see athletic performance relating to the other types of performance pressures that people feel, such as those in the classroom or in the boardroom? Is there anything interesting to note in how these pressures are alike and how they’re different?

Sian Leah Beilock: I did spend a lot of time on the soccer field during my youth, and I learned, often the hard way, how the mental and the physical are linked. Later, as a scientist, I’ve studied this connection closely. Dealing with pressure is a universal. It doesn’t change, whether you have a golf club in your hand or a pencil. It’s the same. Accomplished athletes learn how to thrive when all eyes are on them—and by observing how they manage that and the strategies they use, we can learn a lot about how students survive the pressure of tests and how we can cope with other pressures of everyday life.

TM: In your Talk, you share how overthinking performance and trying to control the situation causes many people to flub under pressure. However, many people at the top of their fields are often considered to be “Type A” or even “control freaks.” It would seem that these people would suffer from what you call “paralysis by analysis,” and yet many seem to be thriving. How do you explain this seeming contradiction?

SLB: There is a time to focus on the details and a time to, as Nike regularly reminds us, “just do it.” When you are practicing and learning your craft, of course you have to pay close attention to the step-by-step process—that can be very important, even critical. But, my guess is, in the moment, when even the most Type A leaders excel, they are trusting their instincts and focusing on the outcome rather than the process. They are always keeping the big picture in mind.

TM: From practicing under the conditions you’ll be performing under to taking the time to write down all the worries and self-doubts circling around in your mind, your TEDMED Talk gave us some valuable strategies to employ when we’re looking to perform our best under pressure. We have a feeling that you have many more good tips, would you mind sharing a few more?

SLB: Well, here’s one tip that I try to use myself. Think about why you should succeed—rather than entertain the reasons why you might fail. I also recommend reinterpreting the signs that your body is giving you. Rather than your sweaty palms and increased heart beat being signs that you are freaking out, remind yourself that these physiological reactions are important and useful. They are shunting resources to your brain and body so that you can think and perform at your best.

TM: What was the TEDMED experience like for you? It would be especially interesting to learn more about how you prepared for the pressure of memorizing and presenting your Talk!

SLB: Believe me, I feel pressure like everyone else (maybe even more powerfully since that’s the crux of my research), but I also try to practice what I preach. Practicing— not just by yourself, but under the same conditions you are going to encounter when you perform—is what matters. It gets you used to what you are going to experience in the big moment. I talk about it as closing the gap between training and competition. I did this to prep for my TEDMED talk and it helped. I practiced on my own, but also in front of others—people I trust and whose opinions I value. I promise you it was nerve wracking every time, but it made the big day a little less daunting.

Growing up Healthy

Adolescence is a shared human experience full of transitions, experimentation, and growth. It is a rite of passage defined in many ways, whether through religious rituals or legal rights, at one of the most critical developmental stages in a person’s life. In society’s best effort to raise healthy kids, we’ve attempted to place structure around the process of “growing up”—we try to standardize the goals we set, achievements we reach, and skills we acquire. However, as adults continue to more closely and carefully usher adolescents into adulthood, we have to wonder: have we over-defined expectations? Are we interfering too much with the ultimate, shared experience of adolescence—learning how to shape your own identity?

Among the Speakers taking the Stage at TEDMED this November are four experts who have studied various facets of adolescence and how the expectations that today’s youth face—whether self-imposed, parental, peer, or cultural—can impact their mental health and their ability to adjust into healthy adults.

In 2017, the World Health Organization reported that young people around the world are suffering from serious depression and anxiety disorders at record rates—and the growth trend doesn’t appear to be slowing down. Thomas Curran, of the University of Bath’s Department for Health, has been studying the rise of perfectionism and how it might be contributing to these near-epidemic levels of serious mental illness among young people. In a longitudinal study, Thomas found an alarming increase in all dimensions of perfectionism among young people. He found that “socially prescribed perfectionism,” the area of perfectionism associated with excessively high social expectations and the dimension with the largest correlation to a variety of mental health issues, is growing at twice the rate of other dimensions. With his work, Thomas hopes to shed light on the burden of perfectionism and how we can help lessen the stresses felt by young people today.

Niobe Way, Professor of Developmental Psychology and the founder of the Project for the Advancement of Our Common Humanity at New York University, also studies the social pressures that many young people face and how it affects them. Niobe is particularly focused on young men and the detrimental impact of expecting boys to be less emotional and caring than their female counterparts. Through her research, Niobe found that stereotypically feminine traits, such as emotional openness, are necessary for boys’ health and well-being, and that we all share the very human desires for emotional intimacy and connection. Furthermore, her first-hand experience as a counselor at an urban public high school reinforced the importance of the need for connection among boys. As a counselor, Niobe saw the positive impact of listening to boys talk about their deeper feelings on friendships and relationships. This experience drove her to begin the research she continues today and to advocate for how to best support the development of healthy young men.

For youth developing and exploring their gender identity, there are many difficult questions to answer. Unfortunately, society often forces young people to live in a binary male/female world where not everyone feels that they belong. sj Miller’s work centers on how these binary norms can be harmful to a person’s mental health and how in today’s evolving culture, we must work to adopt an inclusive way of defining (a)gender. As a professor and consultant on professional development for teaching, affirming, and recognizing trans*+ and gender creative/expansive students, sj helps to expand how we think about gender, our relationship to our own (a)gender identity, and how we can best support adolescents in accepting their own identity. Using schools as a primary vehicle for creating safe spaces for trans*+ and gender creative/expansive students, sj’s research illuminates a path toward broad social change and a society that is more accepting of all people.

Adolescence is also a time where many people begin to explore their sexuality. And while many adults today are taking an increasingly hands-on approach in guiding their children through the various challenges of adolescence, the topic of sex remains a difficult conversation for many families to have. In the absence of sufficient information on the subject, Emily F. Rothman, a public health scholar and professor at Boston University, has found that youth are turning to pornography to learn about sex. Emily is adamant that if young people are going to watch pornography as an educational tool, then they must be able to watch it as critical thinkers, not passive consumers. Furthermore, Emily argues that it’s important to help teens become pornography literate—capable of analyzing what is healthy and what is not in consensual sexual interaction—so that they can have genuine conversations about their views of sex and pornography. Having written a pornography literacy curriculum that is being implemented in a handful of schools in Boston, Emily and her team are now working to find the best ways to help young people think critically about sexual interactions, with the intention of reducing the potential for dating violence and abuse in their relationships.

Adolescence is a period of simultaneous Chaos+Clarity, where individuals break down their identity and rebuild it over and over again. While this developmental period is fraught with the challenges inherent in any transition, today’s youth face an especially complicated set of issues and pressures. As we learn more about the work of 2018 TEDMED Speakers Thomas, Niobe, sj, and Emily, we come to see that keeping non-judgemental communications lines open with young people is one of the best ways to support them through this difficult time in their life. After all, adolescence isn’t meant to be perfect. Instead, it should be a time where burgeoning young people are encouraged to ask questions, make mistakes, and learn to deal with life’s struggles in a way that helps to prepare them to become happy, healthy, well-adjusted adults.

In States Considering Medicaid Expansion: Ignore the Myths and Look to the Evidence

Heidi Allen studies the impact of health and social policies on the well-being of low-income families. She was a leading investigator on the landmark Oregon Health Insurance Experiment—the first randomized study in the United States to evaluate the impacts of a Medicaid health insurance expansion on uninsured adults. Currently, Heidi is an Associate Professor in the School of Social Work at Columbia University, where she teaches courses on health policy and advanced policy practice. Heidi spoke at TEDMED 2017, and you can watch her Talk here.


In my TEDMED talk, I shared my personal experience of a family member who was diagnosed with stage IV cancer while uninsured. By the time my sister was diagnosed, the cancer was no longer treatable. I’m a professor at Columbia University who has studied U.S. health policy for the past decade, and even I had no idea how to help Rachel navigate the end of her life without health insurance. She died in a matter of weeks, which left us all stunned and devastated, but also spared her family the financial difficulties and subsequent access barriers that we inevitably would have encountered had she been given treatment options or required hospice.

Heidi and her sister, Rachel

I didn’t share my story because it was unique; I shared it because there are still millions of Americans who love someone who is uninsured or are themselves uninsured. In 2014, the Affordable Care Act (ACA) offered states the opportunity, and significant federal funding, to expand Medicaid to their uninsured poor. Yet many states have chosen not to do that, including Idaho, where my sister lived. The politics around the ACA – or “Obamacare”, as it is often called – are undeniable and complicated, but much of the policy debate still centers on the worthiness of either Medicaid or the uninsured poor. Whether society is obligated to care for the health needs of the uninsured is for many a moral consideration, but research can and should be used to help evaluate the costs and benefits of expanding Medicaid. Some of this research runs contrary to prevalent Medicaid myths that have been shaping the debate.

At TEDMED, I discussed these myths in the context of research findings from one of the most rigorous studies of Medicaid to date, the Oregon Health Insurance Experiment. The unique experimental design of the study allowed us to examine the impacts of Medicaid while ruling out confounding factors burdening many other Medicaid studies. Put simply, we were able to make causal statements about Medicaid outcomes rather than describing associations or having to compare groups that aren’t easily comparable.

One of the most insidious myths out there is that Medicaid does not provide much benefit beyond what is already accessible to the poor through the social safety net. George W. Bush once asserted that everybody in the U.S. has access to health care because emergency departments are required to provide it. There are elements of truth to this argument – indeed, it was in the emergency department where my sister learned she had tumors in her lungs. But emergency departments are there to assess and stabilize patients, not to provide the continuum of needed health care services. To access these health care services, you need health insurance, or a good amount of disposable wealth. The Oregon Experiment found that compared to the uninsured, those who gained Medicaid through a health insurance lottery had improved access to all types of health care (inpatient, outpatient, and prescriptions); rated care they received of higher quality; had better self-reported physical and mental health; and saw improvement in their family finances.

A recent systematic review of the post-ACA research literature reinforces these conclusions about the Medicaid program, particularly related to how Medicaid improves access to care.

Other recent studies have found that Medicaid expansion increases access to benefits for substance-use disorder treatments, which is vital to addressing the current opioid epidemic. And another study found that Medicaid expansion reduced the use of payday loans in California, further supporting the case that Medicaid provides meaningful financial security, not just health security. In sum, the evidence is abundant and trustworthy that for low-income people, having Medicaid provides tangible benefits well beyond those available through the health care safety net.

This November, through ballot initiatives, voters in Idaho and Utah will get to decide the issue of Medicaid expansion for themselves. I hope my TEDMED Talk will contribute to a more meaningful discussion of what Medicaid expansion would mean.

Q&A with Dr. Farida, Aleppo First Responder

Dr. Farida, an OB/GYN, was the last remaining female obstetrician in besieged east Aleppo, Syria. She studied medicine at Aleppo University and worked primarily at the largest trauma facility in East Aleppo, M2, which was supported by the Syrian American Medical Society (SAMS). During the siege she performed procedures under extreme conditions, even completing a cesarean section in the midst of a chemical attack on her hospital. In December, she and her family were displaced from Aleppo and settled in Idlib province, where she currently works in a SAMS hospital. Dr. Farida played an instrumental role in training midwives and nurses in response to the shortage of medical personnel in besieged Aleppo, and has continued this work by designing curriculum’s for new education programs and advocating for international support for nursing and midwife schools. She spoke at TEDMED 2017, and you can watch her Talk here.


TEDMED: In your TEDMED interview with Leila Fadel you gave us a look into your life working as the only female obstetrician in Aleppo during a time of siege. You tried to stay in Aleppo, your hometown, but the regime took control of the city and you were forced to leave. Can you tell us about what life is like today for you and your family and what has changed since we last heard from you?

Dr. Farida: I can summarize this question with one word loneliness—away from my home, dreams, family, and memories.

TM: You spoke about the obligation you feel to stay in Syria and to help as many people as you can. Your bravery and strength are inspiring. What advice do you have for the next generation of doctors in Syria and other war-torn countries?

DF: Please don’t leave poor people alone without medical care, in this way you’ll give the opportunity for deceivers to hurt and cheat innocent people, and that is what is happening now in Syria.

“This photo is of triplets born yesterday in my hospital. They are premature and need a special medication that doesn’t exist in northern Syria. They are so sick and I hope they’ll survive.” — Dr. Farida

TM: What do you think that health workers—especially gynecologists and midwives—from around the world can learn from your story of providing care in Aleppo?

DF: When you are alone in your battle, many people will hurt you, trying to disable your power, you should not care, and instead go on to satisfy your conscience, not the people.

TM: In your interview, you talk about what Aleppo and other areas of war could use from the global community. Has anything improved on this front in the past year? What are the most pressing needs today?

DF: Unfortunately, the medical situation is going worse, the number of doctors is declining day after day, comparable to the increasing number of evicted.

TM: What was the TEDMED experience like for you?

DF: The TEDMED team is so good and hardworking, and I was surprised when I knew the number of the team (just 7)!!! The team members gave me self confidence and made me feel like a superwoman. TEDMED encouraged me to continue my exhausting job in Syria in spite of hopeless and depressive moments.

Q&A with Jennifer Chenoweth, Human Experience Cartographer

Visual artist and entrepreneur Jennifer Chenoweth is the creator of XYZ Atlas, a hedonic map that portrays the feelings, stories and life experiences of people living in and visiting Austin, Texas. By asking people where they had their most significant emotional experiences, she created a topographic map of emotions of a city. Jennifer spoke at TEDMED 2017, and you can watch her talk here.


TEDMED: What is your artistic medium?

Jennifer Chenoweth: I consider my artistic medium to be change. I began using art as a way to change me. Each artwork is record of growth, one marker along a path, indexing a moment in time. Now my art embraces change in my community and world, marking a moment in our collective experience. We experience place through the framework of time. I try to observe change, document change, flow with change, facilitate positive change, recognize loss, and create artworks that give people a way to consider change and to be courageous about change. I think of art as a tool that can change someone’s awareness and expand their perception. I also love learning about new tools and mediums, and new technology allows for so many more choices.

TM: How did your work evolve?

JC: I am interested in the creative process as an investigation into something I am curious about. It is a fascinating time to be alive and to be a life-long learner. My art projects and social engagement are a way of spending time investigating without an expectation of any certain outcome. As an artist, I’m free to pursue the paths that most interest me, which is the privilege of intellectual freedom. I allow participants, or my audience’s questions, to drive the direction of my work. And continue the conversation of learning. Art is the universal language. Sometimes it can be used to better relate and describe change.

TM: How do you decide what art projects you create?

JC: I am inspired by conversations that I have with friends and people I meet. When I was hosting community art events in Austin, I was struck by how devoted people are to their home, and I was very interested in learning about how one comes to have that sense of belonging. In order to have a healthy and whole life, which we are all seeking, feeling a sense of belonging to a place or a community is very high on the list, along with safety, access to healthy foods, and the possibility of meaningful work. So I started asking questions that allowed people to share their stories that create belonging to home. As I set out to evolve myself, I learned that we feel self acceptance through connection with others and working with a purpose. I try to check the motivation for my projects to see if they create connection and help people find purpose.

XYZ Atlas
Photo by Jennifer Ramos

TM: How has your work changed you?

JC: I started out in life low on emotional and physical health. I was driven by my own need to survive, then to discover what a healthy life looks like. Turns out, health is similar for most of us: healthy eating, exercise, safety, a sense of belonging, and doing work that has purpose.

Photo by Jennifer Ramos

Though all of our tools are actively evolving, our need for meaningful lives remain. I love to use art as a tool for connection, and a way to document how we experience belonging.

TM: What was the TEDMED experience like for you?

JC: The TEDMED experience was a dream, and I’m not sure which was the best part. There were so many amazing people to meet, unbelievable wows sitting in the audience and hearing the speakers live, and the deep support I received months in advance as a speaker getting my talk just right. TEDMED The experience totally wowed me, and was the reward I needed at the end of a huge adventure. Plus, of course, the location of the event was gorgeous.

Q&A with Sara Gorman, Motive Detective

Sara Gorman is a public health and behavioral science expert who has written extensively about global health, science communication, psychology, and mental health. Her recent work explores the psychology behind irrational health beliefs and decisions, and also provides advice for how the general public can discriminate between valid and invalid science. Sara is co-founder of Critica, a community committed to making rational decisions about health and security. Sara spoke at TEDMED 2017, and you can watch her Talk here.


TEDMED: Your 2017 TEDMED Talk explores the psychology behind irrational health beliefs and why we stubbornly cling to them, even in the face of conflicting scientific evidence. It’s fascinating work—how did you first get interested in this area of study?

Sara Gorman: I became interested in this area of study after learning about increasingly widespread, unfounded beliefs that routine childhood vaccines were causing autism and other adverse health effects in children. These beliefs had developed largely from a fraudulent study that was retracted by the journal it was published in and yet people were still holding onto the belief upwards of a decade later. I came to understand that, despite what a lot of people thought, these erroneous beliefs had nothing to do with a person’s intelligence or even knowledge of and familiarity with science. Rather, there were strong psychological and social factors that were at play here and this is what I set out to study. As I learned more about these psychological and social factors, I realized that the erroneous belief in a link between vaccines and autism was not the only area in health and medicine in which people were insisting on false ideas despite the evidence. The pattern cropped up in unfounded beliefs that HIV is not the cause of AIDS, in beliefs that keeping a gun in the home makes a person safer, and even in practices by healthcare providers that are not evidence-based.

TM: As you say in your Talk, “Science depends on updating constantly with new information, but our brains do everything they can to keep us from changing our minds.” The best scientists must be willing to be proven wrong—going as far as to purposely seek it out. What can we learn from them?

SG: Scientists are trained to be skeptics and to look for things that will disprove their beliefs. When a study is published, the logical next step is for someone to try to replicate it, and in many cases, failure to replicate can come to show that the original findings may have been a fluke. Scientists know that they must constantly question everything they think is true and even ask themselves why they believe something. They must expose the origins of any belief or tenet and understand whether or not they believe the evidence upon which these assumptions are based. All of us could benefit from approaching most questions in life through this lens. It requires a lot of self-awareness about how we form our beliefs and a lot of questioning and re-assessing once we have formed them. We should re-examine beliefs that were formed a long time ago and make sure they are still valid, just as scientists never take old research for granted but constantly try to evaluate whether it is still valid or whether something has changed.

Of course, one of the most important things I emphasize in my book and in my TEDMED Talk is that scientists are just as prone to errors in judgment and belief as the rest of us, so even they must always continue to work on honing these skills of skepticism and constant re-evaluation of their own beliefs.

TM: In your Talk, you tell a funny story about how you were convinced you hated the ballet—and you were very vocal about your feelings—until your boyfriend (and now husband) wanted to take you there. You walked the audience through the process of how you allowed yourself to change your mind regarding this firmly rooted belief about yourself. Could you walk us through the process of how a person can learn to accept something, such as a new scientific finding or a revelation in the news, that goes against their beliefs?

SG: There is not any one formula that will always work for everyone but there are some general guidelines that people can follow. To begin with, it’s important to understand how you formed the belief in the first place. Ask yourself under what circumstances you came to believe what you believe. Were you very emotional or even very distracted at the time? Sometimes that can color our initial evaluation of the evidence and make us decide that we think something is true even if it’s not. Once you’ve gained a better understanding of how you formed the first belief, try to investigate what the enablers of the belief are for you. Does holding this belief help you connect with an important person in your life or hold on to an important part of your identity? You want to be able to understand what values and motivators outside of the evidence itself might be influencing you to believe something. Then, assess what the barriers to changing your mind might be. Would changing your mind on this topic be likely to isolate you from a group or identity that’s very important to you? Finally, expose yourself to the new idea slowly. Don’t just radically change directions on something and announce your new beliefs to the world overnight. That will be too intimidating. If you decide you want to change your mind about something, try living a few hours or even a day in your new belief. Try it on for size and just see how it feels. Then gradually increase your exposure to the new belief until you feel more comfortable. Over time, it will hopefully become more natural and less scary to change your mind.

TM: What was the TEDMED experience like for you?

SG: It was absolutely exhilarating. I felt like a celebrity. When I was in school, I always did a lot of theater and have really missed the stage ever since. Being on the TEDMED stage reminded me of those experiences, which I remember with fondness and nostalgia. The TEDMED community is also incredibly warm and inviting! I am so lucky to have been included in 2017 and look forward to following TEDMED for many years to come.

More Speakers Announced for TEDMED 2018

This week, we’re delighted to introduce you to more of the inspiring pioneers who will take the TEDMED Stage this fall. Together, we’ll explore how ordinary aspects of everyday life can have large impacts on our health – everything from the animals we live near and the spaces we live in; to the invisible sounds that we hear and the air that we breathe. We’ll rethink socially accepted childhood norms, and expose a controversial practice that impacts children around the world. We’ll also analyze the intersection of two rapidly merging fields: technology and biology. How are we programming synthetic organisms to fight human disease? What can we learn from the DNA of our ancestors and what is the correlation between that data and our health today?

Check out the 8 Speakers below and learn how their work is helping to reveal why ordinary aspects of our everyday lives can have big impacts on our health.

Did you miss last week’s Speaker announcement? See all of the Speakers that we’ve announced so far at TEDMED.com. Next week, we’ll continue sharing the Speakers who will be taking the stage at TEDMED 2018, and we’ll soon reveal this year’s session themes. You won’t want to miss this year’s event—register today!

Introducing This Year’s Speakers

Over the next few weeks, we’ll be introducing you to the full lineup of thought-leaders who will take the stage this fall at TEDMED 2018. Our first group, announced below, features speakers who will explore a wide range of issues impacting humanity’s health. You can learn more about the Speakers and their fascinating work at TEDMED.com.

We’ll be sharing much more in the coming weeks, including this year’s session themes, so be sure to stay tuned. You won’t want to miss this year’s event—register today!

Q&A with Camila Ventura, Zika Family Caregiver

Camila Ventura is a Brazilian retina specialist who is dedicated to understanding and fighting Congenital Zika syndrome (CZS). Camila’s work with Zika began during the 2015 outbreak in Brazil, when she first reported the ocular findings of three babies affected by the virus during pregnancy. We caught up with Camila to find out more about her past and current efforts to help babies and families affected by CZS. Camila spoke at TEDMED 2017, and you can watch her Talk here.


TEDMED: There has been considerable improvement in our understanding and treatment of Congenital Zika syndrome since the outbreak, especially thanks to the hard work of teams like yours. What are the biggest challenges communities affected by Zika face today?

Camila Ventura: We have certainly made progress not only in understanding the pathophysiology of this new disease and developing vaccines and tests to diagnose the Zika infection, but also learning how to care for children with Congenital Zika syndrome. As I mention in my Talk, it is impossible to care for a child with CZS without an engaged and interactive multidisciplinary team. We have learned that communication between different professionals is essential to plan interventions and potentialize therapies. We have also learned that CZS has a broad spectrum and that there is not a “one recipe” treatment for these children. In other words, treatment cannot be generalized.

We still face many challenges indeed. Our biggest challenge nowadays is getting these families to reach our rehab center at the Altino Ventura Foundation located in Recife, the capital of Pernambuco state. Most of the children are instructed to come weekly for therapies, but because many live in the countryside, dropouts are one of our biggest challenges.

Another important concern is the late complications that some of the children develop. We had at least 15 children who developed hydrocephaly and required a shunt. Despite the fact that the shunt surgery normalized the brain pressure, some of them progressed with vision loss. We also have children with different levels of dysphagia (some requiring gastrostomy). The biggest concern with regard to dysphagia is the risk of aspirating food into the lungs and developing pneumonia. We had 5 cases that died from pneumonia. The last, but not less important, challenge is the uncontrolled and severe seizures that some children present. Seizures bring a lot of concern not only to doctors, but also to families that many times feel impotent and helpless. However, despite all the complications and challenges we are facing, we are very proud of our work with these kids and their families. We now have three of them walking!

TM: What projects and research have you been involved in since you spoke at TEDMED 2017?

CV: Since TEDMED, we received a National Institutes of Health (NIH) grant and started a collaborative research study with the RTI International, a well-known and respected research non-profit organization. The main goal of this study is to follow 200 children with congenital Zika syndrome and their families for a period of 5 years. By assessing each child, we are trying to understand important outcomes such as neurodevelopment (motor skills and cognition), functional skills (activity of daily living, feeding, and sleeping), social and language skills, temperament, and behavior. Another aim of this study is to understand how families have coped with this new challenge and adapted to disability by assessing stress level, family dynamics, and social support. We hope that this study will enable us to provide an optimized habilitation treatment once we identify specific delays in the child’s development and at the same time, provide caregivers with psychological and social support by understanding their specific needs.

P.S.: I gave an interview at RetinaLink after TEDMED and the NIH Grant.

TM: Your team is composed of a multidisciplinary group of specialists, each skilled at addressing one of the many systems affected in babies with Congenital Zika syndrome. What were some of the challenges in bringing doctors of different backgrounds together? Were there any surprising or unexpected outcomes that came as a result of the collaboration?

CV: To answer your question, I need to explain about our history. The Altino Ventura Foundation is a non-profit organization that started in 1986 as an eye center for the low-income population. In 2004, we opened our Rehabilitation Center that used to be run in a small rented house and we were only accredited to perform visual and motor rehabilitations. However, in 2014, we finally moved to a 3-story building owned by us, and that was when we became fully accredited to rehabilitate patients with multiple disabilities in all four domains (visual, hearing, motor, and intellectual).

By then, we already had the different physicians and therapists working at the same place working for the same goals. Also, at the FAV we have always valued teamwork and interaction between our professionals. However, with the advent of Zika, the interaction was intensified, which brought more unity to our work. Thanks to this strong connection, we have been able to see how it has positively affected our children’s outcomes.

Another important aspect that Zika brought to our institution was the possibility of developing our own protocols for Zika. Since we have the oldest patients with Zika, we did not get to learn from others how to treat our patients. Zika empowered us to develop our own protocols that are used today to treat our children. The visual impairment assessment protocol, for example, was developed by our team and published in the Journal of the American Association of Pediatrics (JAAPOS) in 2016 with the intent of sharing with the world what we have learned so far about the visual aspect of CZS. In addition, the FAV has been a hive for other professionals from other states in Brazil and from the US to visit and to be trained for CZS habilitation treatment.

TM: You work closely with the families of babies affected by Congenital Zika syndrome, and you mention in your Talk that you consider mothers and caregivers to be your best allies in the treatment of their children. When a family is empowered to be involved in treatment, what sorts of positive results do you see?

CV: I truly believe that families make a difference in the child’s outcome not only for children with Zika, but for every child that needs close assistance. In 2016, we realized just how slow the response to our early intervention therapy was—children were coming once every week to the FAV Rehab Center, and we had to think of different strategies since we could not provide as many assessments as we would have liked due to Brazil’s economic and financial situation. We basically had to work with what he had. Despite teaching mothers/caregivers how to stimulate their child at home, we knew they weren’t able to purchase the toys or equipment that were necessary to do so. We then came up with the idea of handcrafting a multi-sensory kit with the mothers/caregivers. They have been using the multi-sensory kit since then and we have filmed a tutorial of how to use the kit and uploaded the series to YouTube so other families can learn and benefit from this idea as well. Here are our tutorials divided into parts 1, 2, and 3. We also provided mothers/caregivers with constant workshops to empower them because we know now that committed parents/caregivers can change a child’s overall outcome.

TM: What was the TEDMED experience like for you?

CV: Absolutely surreal! It was the most thrilling, exciting, scary, nerve-wracking, and challenging experience I ever lived. Having to memorize my 15-minute talk in English and deliver it with emotion with all the tension that was going on inside me was not easy. But after succeeding and looking back at the entire preparation process, I can only thank the amazing professionals I got the chance to work with since day one. I appreciate the sweetness and patience of Lucy Barry, the great suggestions from the straight-to-the-point Marcus Webb, and the amazing support I received from Shirley Bergin. I could not ask for a better team! And if I can add, now that I have stepped in the TEDMED shoes, I value even more each and every speaker that gets on stage to share their personal and/or professional experience – we all have walked an extra mile! Thank you TEDMED for such an amazing experience!

Q&A with Chera Kowalski of the Free Library of Philadelphia

In her 2017 TEDMED Talk, Chera Kowalski shared what it was like to work at the McPherson Square Library, situated in Philadelphia’s “Needle Park,” where she and other staff members played the dual roles of librarian and lifesaver in a community stricken by the opioid crisis. We talked with Chera to learn more about her perspective and her courageous work.


TEDMED: Why did you want to become a librarian? Have those reasons evolved over the years?

Chera Kowalski: In the beginning, I was drawn to the research aspect of librarianship because I was constantly doing research as an undergrad. However, I ended up volunteering with the Free Library because I didn’t want to close myself off from exploring the public librarianship side of the field. As I saw more and more of what a public library is, I wanted to stay because I realized I wanted to work with the public, with the community.

Also, as I have reflected more on my career choice, I realized growing up my mother was always helping people out even when in the midst of her own hardships. She was always connecting people to resources. In the end, I think it was witnessing that which really directed me towards public librarianship. I may not have realized it when I first started on my path to becoming a librarian, but today I definitely do.

TM: Most people wouldn’t think of a public library as being a critical local resource in the opioid epidemic, but Philadelphia’s McPherson Square branch and other libraries across the country are serving as just that. Are there other types of community resources that you think have undiscovered or underused potential in terms of being able to meet the needs of their communities?

CK: Yes, of course there are other types of community resources that have undiscovered or underused potential in meeting needs of their communities. It is important to always explore the landscape of your community because it is more likely than not there are many resources sitting undiscovered or underused. As a public librarian, I am always seeking out resources of all kinds because we can’t offer everything the community needs, but we can connect the community to other resources supporting the particular need. And many public libraries, including the Free Library of Philadelphia, also collaborate and partner with other organizations as well to ensure the needs and wants of the community are being met.

TM: Do you work with other libraries around the country who are facing similar challenges within their communities?

CK: Since the story of our efforts at McPherson Square hit the media, other libraries across the country have reached out to us to ask  how to get their library administration and/or the community to understand the need for overdose reversal training, how to engage the community around the topic of the opioid and overdose epidemic, and so on. I have presented on panels with other public library professionals to educate and engage more people in our field on the issue because the opioid epidemic is affecting communities of all kinds throughout the country and the library needs to be one of the resources communities can turn to for support.

TM: What would you say to critics and skeptics who might say things such as: providing the overdose-reversing drug naloxone at public libraries enables opioid users, or that you shouldn’t administer it in front of children?

CK: I keep saying it is a tool, a skill right up there with CPR. The thing that holds people back from recognizing this, to me, is stigma, misinformation, disinformation. This is why I have made the choice to discuss not just what we do at McPherson Square Library, but also share my personal story. Sometimes it is easier for people to connect to a story than to facts, and the personal story sometimes has the potential to open the doors to those facts and change minds.

At McPherson, the library and the park are always full of kids, and so when people unfortunately overdose in the library or just outside, kids are seeing this, experiencing this trauma, and we did not want kids or anyone to see someone die, especially when there is something available to save lives. The kids and the residents of Kensington witness overdoses constantly because Kensington is the epicenter of Philadelphia’s epidemic. They are experiencing this trauma over and over again, and if naloxone wasn’t available many more deaths would be the result.

TM: What do you think the future of the opioid crisis looks like, and as someone working in the midst of it, do you see an end in sight?

CK: Even though progress is being made, it is not nearly enough, soon enough. The issue is so complex, so complicated, so massive, constantly changing, it’s daunting. We are so behind on what needs to be done and what’s holding us back is, once more, the stigma, the misinformation, the disinformation. There is so much being done on the ground level, the frontlines, but bureaucracy, the concern for profit, the concern for keeping a political seat, just the refusal to educate one’s self are slowing down the critical parts of policy change, of equitable access to treatment, and more. But with all that said, I do have hope because I know there a lot of people willing to put in the effort, the exhaustion, the hard work to change the course of this crisis.

TM: What was the TEDMED experience like for you?

CK: TEDMED was definitely not my usual scene, but I connected to it because everyone there wants to solve problems, challenges, and do so collaboratively. It was such a positive, encouraging experience, I felt reenergized and motivated. The experience also pushed me to reflect on where I want my professional and personal path to lead, which is why I ended up moving into a new position with the Free Library of Philadelphia as the Assistant to the Chief of Staff. It was a heartbreaking, difficult decision, but in the end I had to see the bigger picture. I am still connected to McPherson Square Library and the Kensington community. I visit frequently and I am still finding professional and personal ways to continue to support the library branch and the community.