Metformin and the TAME Trial: Magic Pill or Monumental Tool?

Written and submitted by Nir Barzilai.

Nir currently serves as Director of the Institute for Aging Research at Albert Einstein College of Medicine, where he is also Director of the NIH’s Nathan Shock Center of Excellence in the Basic Biology of Aging and the Paul F. Glenn Center for the Biology of Human Aging Research. Dr. Barzilai is also the Deputy Scientific Director of the American Federation for Aging Research (AFAR). Nir spoke on the TEDMED stage in 2016, and you can watch his talk here.

Today, the possibility of living healthier and longer is not science fiction—it’s science.

Thanks to the more than three decades of research in the basic biology of aging, a range of promising drug interventions are ready to transform growing older from a period of sickness to a period of vitality.

These interventions build on the knowledge that the biological processes of aging are the major driver of major diseases that afflict so many of us we grow older.

If we targeted or delayed aging, we could delay or prevent age-related diseases.The most promising effort is a new study, the TAME (Targeting Aging with Metformin) Trial: this novel clinical trial will test whether the drug metformin—a widely used, affordable treatment for type 2 diabetes—can delay the onset of age-related diseases including cancer, diabetes, and heart disease.

Funds must be secured in order to take what we have learned from the lab to human trials, but let’s be clear: metformin is not a magic pill.

Rather, the TAME Trial is a tool that can monumentally improve our health as we grow older. The metformin clinical trial will serve as the tool or framework for the most important medical intervention in the modern era since antibiotics—a new category of drugs that add years of healthy life as we age.

For each of us individually, TAME will help decrease disease. If successful, TAME is expected to lead to the use of Metformin and the development of other drugs to target aging and help delay or prevent the onset of debilitating conditions or diseases.

Plus, we will be less at risk for financial fraud or exploitation, as cognitive skills necessary for essential functions such as managing medications and finances—such as memory, reasoning, perception, and language skills—will be less impaired.

For society at large, the development of drugs resulting from the TAME trial will increase health care savings. A recent economic analysis showed that slowing or modifying age-related diseases by just 20 percent would save more than $7 trillion in health care spending in the United States alone over the next half-century.

We call this the Longevity Dividend: if we increase years of health as we age, we actually can decrease the financial burden of related healthcare costs.

Moreover, the TAME Trial would cost 96% less than the cost to develop and win market approval for a single drug: $69 million vs. $2.4 billion, as estimated in a 2014 Tufts University Study.

By focusing on metformin first, as a paradigm of a drug targeting aging, the TAME trial has the potential to unleash the powerful research and development engine of the pharmaceutical
industry to generate next-generation drugs, individually or in combination, to prevent and delay multiple age-related diseases.

In turn, we can transform aging from a period of sickness to a time of extended vitality, and age-related diseases can be treated more effectively and cost effectively.

In essence, we can live longer and live well.

With one American turning 65 every eight seconds today, the TAME Trial is a small investment that can make huge impact by saving trillions of dollars while invigorating millions of lives.

In an era of rising health care costs and unpredictable health care coverage, delaying or targeting aging could be the most efficient method of achieving primary prevention available to us in this century.

The field is ready to translate basic biomedical research into clinical trials like TAME, yielding therapeutic interventions that will extend health while decreasing healthcare costs.

With a concentrated, coordinated effort across the public, private, and philanthropic sectors, together we can move aging research from the labs into our lives.

The TAME Trial is poised to be a monumental tool to transform how we age.

The Healing Power of Art

Art exposes us to new ideas and people we may never otherwise meet, allowing us to have unique emotional experiences and to feel connected to one another. It promotes dialogue and creates a platform for us to share experiences and ideas. Research shows that the simple act of engaging with art is connected to positive health outcomes, such as reduced stress and anxiety.

TEDMED has long celebrated this connection between art and health. For example, in 2015, creative art therapist Melissa Walker took our stage to share how she engages patients with traumatic brain injury and post-traumatic stress disorder through making masks, giving service members a non-threatening platform to unravel their stories and unlock their emotions. And, last year, artist and patient advocate Ted Meyer shared his story and showcased his 18-year project Scarred for Life which chronicles the trauma and courage of people who have lived through accidents and health crises.

This year at TEDMED, we will hear from two artists who use their artistic talents to communicate stories about themselves and their communities. By sharing personal experiences of loss and healing, and depicting the emotional experiences of entire communities, these two artists are using are promoting well-being through their unique artistic outlets.

For cellist Zoë Keating, music has always been a means of risk-taking and personal expression. With her husband’s encouragement, Zoë gained the confidence to conquer intense stage fright and to pursue a professional career in music after spending several years in the tech world as an information architect. When her husband was diagnosed with stage IV non-smoker’s lung cancer, Zoë’s story pivoted and she took on another role—that of the caregiver. She paused her career to care for her husband and their young son, documenting their family’s experience navigating the complicated US health care system and their insurance battles on her music blog. After her husband died, Zoë coped and communicated through her music.

Zoë describes her music as a lifeline—a way for her to rebuild her world after loss and move forward. Scientific research has reinforced the healing power of music: researchers have found that music is intertwined with our experiences, creating musical and emotional memories which we can unlock to promote healing and recovery. For example, patients with brain injuries may be unable to talk, but are able to use singing as a starting point—propelling them on the path to regaining speech. Zoë remains an advocate for patients like her husband and continues to perform original songs influenced by her experiences and emotions. Each piece of music she performs is a story that brings her closer to her audiences than ever before.

Like Zoë, Artist Jennifer Chenoweth has experienced personal trauma and found healing through her art. Growing up, Jennifer faced physical and emotional challenges, and art provided her with an outlet and a community that she says helped lead her on a path to wholeness. Jennifer describes art as the “door to stories,” and through her XYZ Atlas project, she uses art as a way to explore how experiences create a sense of belonging and why we become emotionally attached to certain places.

Jennifer Chenoweth’s Hedonic map of Austin

By correlating psychologist Robert Plutchik’s wheel of emotions to a color wheel and using hundreds of anonymous responses to a survey about where individual emotional experiences have occurred, Jennifer created a “hedonic map” of her hometown Austin, Texas. The National Endowment for the Arts uses similar techniques to provide healing experiences for military veterans. The idea behind this program is that creative platforms help both patients and providers gain a more coherent understanding of the patient’s underlying status, making “invisible wounds” more visible and readily addressed. Jennifer sees emotion as a surrogate for health status. Her maps allow her to visually demonstrate both the disparities and commonalities of individuals in the community, providing lessons of compassion and connectedness.

TEDMED has always championed the role of art in health and its potential to promote well-being, whether by simply using exposure to uplifting art to expedite the healing of patients in the hospital or by creating a new platform to evaluate our communities and promote dialogue. These Speakers are making the invisible visible, and facilitating new ways for us to embrace our connectedness.

Navigating the Aftermath of Epidemics

The symptoms and implications of disease often reach far beyond the individual, carrying consequences for communities, countries, and sometimes the whole world. There are broad social, psychological, economic, and political ramifications when societies are struck by epidemics. Over the past few years, newspaper headlines and Twitter feeds have been filled with stories of Zika, Ebola, and malaria devastating entire communities. We have found ourselves bewildered by the unknown implications of these viruses, confronted with drug resistance, and in need of accessible and affordable diagnostic tools. This year at TEDMED 2017 we will hear from Speakers and Hive Innovators who are facing the challenges of epidemics head-on.

Ebola Survivors Clinic staff

As a rookie physician, Soka Moses helped lead his community through the bleakest days of the Ebola epidemic as Clinical Director of the Ministry of Defense Ebola Treatment Center in Monrovia, Liberia. Soka and his staff treated over 600 patients, risking their own infection and death. After saving hundreds of lives, Soka has now turned his attention to Ebola survivors. According to WHO, Liberia is home to 5,000 survivors, many of whom lost their families to the disease. That is not all that they have lost, as both patients and health care providers who have come in contact with the sick face severe social stigma that isolates them from their communities. Physically, Ebola survivors experience symptoms such as joint pain, dizziness, blurred vision, and the inability to concentrate to such severity that it precludes them from working. The unmet need to care for these patients prompted Soka to take on a new role as Director of the Ebola Survivors Clinic at Redemption Hospital in Monrovia, where he helps survivors reclaim their lives. While there are currently no cases of Ebola infection in Liberia, the effects still linger, and a recent outbreak of Ebola in the Democratic Republic of Congo is a reminder that continued prevention, detection, and response efforts are essential to ensure outbreaks do not turn into epidemics. To that end, Liberia and the United States are partnering to perform clinical research studies at Redemption Hospital and other sites across the country in order to ascertain the long-term ramifications of Ebola virus disease.

Like Soka, retina specialist Camila Ventura is working alongside her patients as they discover the still unknown, long-term consequences of a virus. Camila, who comes from a family of ophthalmologists in Recife, Brazil, works with patients and families affected by Congenital Zika Syndrome. Camila found herself on the front lines of the Zika epidemic after reporting ocular findings in babies with the Zika virus. While the number of cases of Zika infection in Brazil, the Caribbean, and the United States are down this year, US cities near the Mexico border—where infection data is limited and the rainy season has begun—are being cautious. One case of the Zika virus, likely spread from a mosquito, was recently reported in Hidalgo County, Texas.

There’s a new understanding of how infants with Congenital Zika Syndrome can present with a broad spectrum of symptoms, including visual impairments. Camila is actively gathering information on the visual impacts of this virus, closely following her infant patients to uncover the mechanisms behind their unique symptoms and the best treatment options for them. Her team partners with families of babies with Congenital Zika Syndrome to navigate the unknown prognosis and long-term consequences of this virus.

Zika can be a challenge to diagnose because there are so few copies of the virus in a patient’s body, which means that it requires a highly sensitive test. This year at TEDMED, we will hear from Omar Abudayyeh of SHERLOCK, who will take the stage during the Audacious session alongside 19 other innovators who are transforming health and medicine. At SHERLOCK, Omar and his colleagues found a new application for CRISPR technology, using it to detect and diagnose biologic material rather than to edit genomes. The team designed a way to detect viruses, bacteria, and cancer at attomolar levels, allowing for highly accurate diagnosis in incredibly small amounts of sample. The result is a simple and inexpensive diagnostic tool that can be rapidly used—vital when time is of the essence.

The Anopheles mosquito, which transmits malaria

While viruses like Ebola and Zika have presented the global health community with new and unexpected challenges in terms of our ability to offer timely diagnosis and treatment, our world has long been familiar with the suffering caused by malaria. Malaria remains a leading cause of death in developing countries, where young children and pregnant women are at greatest risk of infection. Physician and professor Nick White studies this disease from Mahidol University in Bangkok, Thailand. In 1981, Nick and his colleagues happened upon a Chinese scientific journal describing the antimalarial properties of an herb called qinghao. They performed large-scale studies, treating adults and children infected with malaria with derivatives of qinghao, commonly known as artemisinin. Artemisinin combined with a conventional antimalarial, or artemisinin-based combination therapy (ACT), quickly proved to significantly decrease malaria morbidity and mortality worldwide. Despite the effectiveness of the treatment, Nick and his team faced significant challenges convincing policy makers to adopt it, but found success after another party published an incendiary article in The Lancet. Now, this successful treatment of malaria faces new challenges, as artemisinin resistance has repeatedly emerged in Southeast Asia. In the past few years, Nick and his team have made advances in exploring the options available to eradicate these resistant strains.

Together, these Speakers and Innovators demonstrate diligence and ingenuity as they bravely tackle the overwhelming challenges surrounding epidemics. Whether by navigating the unknown effects of disease alongside patients or developing new ways to diagnose and treat pathogens, their work inspires hope. We invite you to join us at TEDMED this November to hear them share their remarkable stories.

Drug Addiction: A Complex Problem Requiring Complex Solutions

Every day, 91 Americans die from an opioid overdose. This shocking statistic is a clear signal that we are currently in the midst of the worst drug crisis in US history, according to the National Institute on Drug Abuse. Drug overdose is the leading cause of death for Americans under the age of 50, largely attributed to the rapidly worsening rates of opioid abuse. How this opioid epidemic spread across the nation is complex; similarly, treating the affected, preventing more deaths, and stopping the spread of this epidemic requires complex solutions.

Though the problem is widespread, so are the efforts to stop it. This year at TEDMED, we will hear the stories of three individuals leading the fight against the opioid crisis, and drug addiction more broadly. These Speakers come from West Virginia, which has the highest overdose rate in the country, a community library in Pennsylvania that sits next to an open space referred to as “Needle Park”, and British Columbia, Canada, home of the first legally-sanctioned supervised safe injection site in North America. By innovatively engaging their communities to combat the devastating opioid crisis, the TEDMED Speakers highlighted below are implementing promising new strategies to help stem the tide of this epidemic.

One of those individuals is Jim Johnson, the Director of the Mayor’s Office of Drug Control Policy in Huntington, West Virginia—a city with 10% of its 50,000 residents addicted to opioids. In Huntington, like in many cities and towns all across America, people from all walks of life—the young mother, the retired steelworker, the teenager—are affected by opioids, and the entire community bears the weight of addiction. One strategy that Huntington has used to deal with the drug crisis is incarceration. However, recent analyses have found that while state and federal prisons across the US house nearly 300,000 prisoners for violating drug laws, strict prison terms have not been correlated with decreases in drug use or drug related crime. As a former police chief and jail administrator, Jim realized that alternatives to incarceration were needed to effectively tackle addiction in his community. In his role at the Mayor’s Office, instead of solely working to curb the supply of illicit drugs, Jim chose to focus on decreasing demand. He’s partnered with diverse community organizations to help divert people addicted to opioids away from the prison system and to assist them in gaining access to treatment and reclaiming their health.

Huntington, West Virginia

The toll of addiction also reaches into schools, and tens of thousands of US children are affected by the opioid crisis. Like many of the children in Huntington, West Virginia, Chera Kowalski grew up exposed to drug abuse through her parents, who have been in recovery for over twenty years. Today, Chera is the Adult/Teen Librarian at the McPherson Square branch of the Free Library of Philadelphia, located in a neighborhood heavily affected by opioid abuse. Chera views the opioid crisis as a community issue, driven not just by individual behavior but by social determinants including limited employment, lack of housing, inadequate mental health treatment, and poor education.

Viewing the library as a public resource for her neighborhood, Chera sees her role, and the role of all public libraries, as one of community support and responsiveness. When Chera goes to work, she is there to help whoever comes through the library doors with whatever they need, to the best of her ability, at any time. Due to the library’s proximity to “Needle Park,” she is often involved in direct intervention with Naloxone—the injectable or nasal spray that blocks the effects of opioids—when someone overdoses outside the library. Other times, her role comes in the form of providing a supportive space for the young people in her community. Chera encourages kids affected by the opioid crisis to come to her for advice that often extends far beyond summer book recommendations and instead revolves around how to navigate difficult realities in their lives.

The Free Library of Philadelphia, McPherson Square Branch

Like Chera, Mark Tyndall, the Executive Medical Director for the British Columbia Centre for Disease Control, understands the importance of diverse types of community support for people and families battling drug addiction. Focused primarily on developing and implementing harm reduction models, Mark works closely with InSite, the first legally-sanctioned supervised injection facility in North America, which offers a clean location where people using illicit drugs can be treated with dignity. InSite also provides researchers with a valuable platform for data collection, enabling them to better understand the driving forces behind addiction. One such driving force is underlying trauma, as patients often use drugs to self-medicate. Mark believes that the best way to combat opioid addiction is by treating these underlying drivers and, in doing so, decrease demand for drugs.

The opioid crisis is complicated, and it demands intervention on multiple levels. These three TEDMED 2017 Speakers are pursuing solutions that help those affected across this spectrum. They are not alone, and a number of TEDMED’s Partner organizations are also working to combat this epidemic. Dr. Patrice Harris, head of the American Medical Association’s task force on opioid abuse will also be attending TEDMED this year, and she is calling for greater attention on treatment, saying that, “Until treatment for substance-abuse disorders is fully funded, I worry we won’t be able to reduce the number of overdose deaths.”

Given the severity of the opioid epidemic, we are looking forward to convening with these individuals and hearing their insights about this pressing health issue at this year’s TEDMED event. Their evidence-based health policy efforts, alongside their innovative and collaborative initiatives, are mobilizing communities to treat the underlying causes of the opioid epidemic, but there’s still more to be done. Join us this November to engage with these Speakers and to hear from them first-hand.

Learning about memory from instincts

Written and submitted by Tomás Ryan and Lydia Marks.

This guest blog post is by Tomás Ryan, Assistant Professor and Principal Investigator at Trinity College Dublin. Tomás spoke on the TEDMED stage in 2016, and you can watch his talk here.

How is it that we can remember a single experience for our entire lifetime and yet simultaneously forget things that are centrally important to us? To answer this question, we need to understand the fundamental mechanisms that enable memory storage and retrieval. However, until recently, research in the field of memory has mainly been conducted through the lens of amnesia. While this approach provides us with valuable clues about deficits in memory, it doesn’t always inform us about the physical nature of a specific memory.

To understand the fundamental basis of memory, we need to investigate how individual memories are stored in the brain. The best way to do this is to trace a specific memory starting from its inception. The process of learning a new memory involves a material change in our brains, which we refer to as a specific memory engram. In my TEDMED 2016 Talk, I explained my research showing that the data of memory persists beyond the functional experience of amnesia, thus separating the physical entity of a memory from the process of remembering.1,2,3,4 These findings, which have since been replicated by Christine Denny’s lab at Columbia University, show that in cases of amnesia our brains may lose access to our memory engrams, but this does not mean that the engram itself is lost or damaged.5 Rather, the mechanism for recall has been hindered, but upon reactivation of a specific memory engram we see recovery of the behaviour associated with that memory.

Image of a memory engram labelled in a mouse brain.

Given that we are able to retrieve memories even after they have been obscured by amnesia, we know that a memory must be stable enough to withstand the ever-changing environment inside and outside of our bodies. To give us a clue about the nature of a single memory, we can turn to another stable and long-lasting mechanism that drives our behavior.

Instincts: the innate, hardwired rules that inform our thoughts, beliefs, and behaviors. These are the factory settings of our brain. They are pieces of genetically encoded information that are vital to our survival as individuals and as a population. Like instincts, memories are also imperative to our success because they allow us to learn about cause and effect from previous experiences and to make predictions about the world around us. While both memories and instincts last for a lifetime, they are also malleable. Memories change through the process of recall, while instincts adapt as we acquire new information about the world around us.

But the connection between memories and instincts goes deeper than just having similar properties. We know that memories build off of our instincts and we use both of these tools to help react to any situation. Given this relationship, we can assume that there must be some continuity between the way our brains encode both memories and instincts. We can think of it as a shared language, allowing us to process instincts and memories as similar pieces of information.

Schwerpunkt sculpture by Ralph Helmick, on display in MIT’s McGovern Institute.

What if we were to look at memory engram research through the lens of evolutionary biology? We find a scenario where a particular learned engram becomes so valuable to a population that it is passed down through generations by culture or by environmental necessity. When an individual happens to inherit a genetic mutation (randomly formed in the sperm or egg producing cells of a parent) that allows this specific memory engram to become an innate instinct—or ingram—that person becomes better suited than their peers who have to learn this lesson through experience. After many generations, this ingram becomes more prevalent in the population by means of natural selection—out-competing the individually-acquired engrams. With this working hypothesis still in its infancy, there are many possibilities for investigation that will hopefully result in a better understanding of the fundamental basis of memory. If instincts are indeed formed by ‘copying’ memories, then it may eventually be possible for our future evolution to be driven not just by factors important for basic survival and reproduction rate, but also by our culture and education.

1. Ryan, T., Roy, D., Pignatelli, M., Arons, A. and Tonegawa, S. (2015). Engram cells retain memory under retrograde amnesia. Science, 348(6238), pp.1007-1013.

2. Tonegawa, S., Pignatelli, M., Roy, D. and Ryan, T. (2015). Memory engram storage and retrieval. Current Opinion in Neurobiology, 35, pp.101-109.

3. Ryan, T. and Tonegawa, S. (2016). Rehebbilitating Memory. Neuropsychopharmacology, 41(1), pp.370-371.

4. Roy, D., Arons, A., Mitchell, T., Pignatelli, M., Ryan, T. and Tonegawa, S. (2016). Memory retrieval by activating engram cells in mouse models of early Alzheimer’s disease. Nature, 531(7595), pp.508-512.

5. Perusini, J., Cajigas, S., Cohensedgh, O., Lim, S., Pavlova, I., Donaldson, Z. and Denny, C. (2017). Optogenetic stimulation of dentate gyrus engrams restores memory in Alzheimer’s disease mice. Hippocampus.

Promoting Equity and Increasing Accessibility For All

The term “health equity” is broadly used, yet somewhat abstract. The World Health Organization defines it as “the absence of avoidable or remediable differences among groups of people, whether those groups are defined socially, economically, demographically, or geographically.” One angle of health equity that we don’t often think about is that of accessibility for individuals facing the barriers imposed by disability. This year at TEDMED 2017, we will hear from Speakers focused on improving equity for people with disabilities and who are working to make the world a more accessible place for all.

Automatic Alternative Text

Facebook accessibility specialist and engineer Matt King lost his vision completely in college. When he joined our accessibility team after more than 20 years in the accessibility field, one of the projects he was most excited to work on centered on using object recognition technology to automatically describe photos for people who are not able to see those photos. Today, with our launch of automatic alternative text, we're taking an important step towards achieving that goal.Automatic alternative text, or automatic alt text, is a new feature that generates a description of a photo through object recognition technology for someone who cannot see the photo. Before today, people who are visually impaired could only hear the name of the person who posted the photo as they scrolled past photos on Facebook. Now, if they're using a screen reader on iOS, they'll hear a richer description of the photo thanks to automatic alt text. For example, for a group photo on the beach, a person using a screen reader on iOS would now hear, “This image may contain: Three people, smiling, outdoors.” We are rolling this out in English over the next few weeks and will add more languages and platforms soon.Facebook's mission is to make the world more open and connected, and that means everyone, including the visually impaired community. Worldwide, more than 39 million people are blind, and over 246 million have a severe visual impairment. While this technology is still in its early stages, tapping its current capabilities to describe photos is a huge step toward providing our visually impaired community the same benefits and enjoyment that everyone else gets from photos. As Facebook becomes an increasingly visual experience, we hope our new automatic alt text technology will help the visually impaired community experience Facebook the same way others enjoy it.

Posted by Facebook Accessibility on Montag, 4. April 2016


Matt King is making technology and social networking more accessible and user-friendly for individuals with disabilities. As Facebook’s first blind Accessibility Engineer, Matt recognizes that as technology evolves, there is an opportunity to design it in a way that is inclusive and accessible for all users. A record-breaking tandem cyclist and three-time Paralympian, Matt is skilled at breaking through expectations and barriers. Driven by the belief that providing accessible platforms for creativity and social networking benefits everyone involved, Matt has channeled his determination toward creating equitable opportunities for people with disabilities to engage and make connections online. Matt challenges us to look at technology through a broader lens, make it more equitable, and work to redefine what is meant by “user experience” in Silicon Valley.

Amber signing with Wiz Khalifa

Much like Matt is making technology more accessible, American Sign Language (ASL) music interpreter Amber Galloway Gallego is providing the Deaf community with full access to the experience of music and live performance. Prior to launching her own production company, Amber had only witnessed lackluster ASL interpreters at concerts—performances that left her Deaf friends feeling bored and devoid of the same personal connection to music that Amber felt so strongly. After watching the expressive work of a Deaf dance company, she was inspired to bridge the access gap in the music industry. Her work is captivating, conveying emotions, tone, and guitar riffs through sign, interpreting for stage artists like the Red Hot Chili Peppers and appearing on Jimmy Kimmel Live! with Wiz Khalifa.

Amber’s work to make music more accessible to the Deaf community shines a spotlight on another area of inequality: health care. Often, health care settings fail to provide qualified interpreters for their patients or providers lack cultural competence when communicating with their Deaf patients. Because of language and cultural barriers, Deaf patients experience higher risk of morbidities such as cardiac disease and obesity, often entering the health system at a more expensive point in their care.

Another population often afflicted by a lack of access to care and feelings of isolation is the elderly. Numerous studies have shown that chronic loneliness and social isolation can have negative health consequences; in fact, loneliness exceeds obesity as a predictor for premature death. The experience of loneliness is not limited to a particular part of the world. In the United States and the United Kingdom, 30% of adults over the age of 65 and 50% of those over 85 live alone. Sophie Andrews, CEO of The Silver Line helpline, is committed to forging social connections and bridging the communication gap for older people in the United Kingdom. The Silver Line is a 24/7 hotline that fields 10,000 calls each week, providing callers with information about local services, friendship to combat loneliness, and a place to report neglect or abuse. Fifty-three percent of callers to The Silver Line say they have literally no one else to speak with. Sophie and her organization provide an accessible platform for older people to engage in confidential conversations without judgement.

These Speakers are taking steps towards connecting our world by creating platforms of inclusion. They have made music, health care resources, personal connection, and technology easier to access for so many people, improving health outcomes and personal well-being. We invite you to join us this November to hear their stories and learn more about their work.

Challenging the drug development status quo

Written and submitted by Sharon Terry

This guest blog post is by Sharon Terry, President and CEO of Genetic Alliance and Founding CEO of PXE International. Sharon spoke on the TEDMED stage in 2016, and you can watch her talk here.

We are told frequently that we’re fortunate to live in a new golden age of medicine, that advances taking place in genomic research, immunology and other biomedical research fields are bringing us closer to a horizon that will see more effective treatments and even cures for the diseases that have plagued humankind for generations.

And yet, the reality, to this point, is somewhat less glowing than the sales pitch. A study cited in the New York Times found that we’re spending more money than ever on drug development with fewer positive results to show for it. The study found that, for every billion dollars spent on pharmaceutical research and development since 1950, the number of new drugs reaching the marketplace has fallen every nine years by roughly half. So, we remain in a state in which there are thousands of diseases, but only hundreds have treatments.

There are a number of reasons to which we can point for this declining productivity in the drug development pipeline, from the higher costs of conducting clinical trials to the need for Food and Drug Administration reforms. From my own experience, however, I would strongly suggest that the biomedical research infrastructure needs to take a hard look at itself and ask, first, whether a hypercompetitive, non-collaborative approach to biopharmaceutical science is conducive to achieving optimal progress and, second, why it is not actively engaging some of its most valuable resources—patients and family members.

In my 2016 TEDMED talk, I discuss my family’s personal experiences with the medical research community after my two children were diagnosed with PXE, a rare genetic disorder that results in a slow advance of premature aging. After the diagnosis, we were contacted by researchers asking for blood samples for a research project focused on identifying the gene that causes PXE. Only two days later, another research center also wanted blood samples. Not wanting my young children to be stuck with needles twice, I asked if they could share the samples taken by their Boston counterparts. They looked at me as if I was suggesting using leeches and spells to cure this disease.

That’s when we realized that the world of biomedical research is an alien landscape to those of us who are unfortunate enough to be dependent on it. There is intense competition between scientists and academic institutions. Ok, I know that competition can generate great progress in an economic paradigm. But, in academic research, where information is critical to medical breakthroughs, and tax payer dollars are supporting the work, the hoarding of data in order to get more funding, more published articles, a better tenure track, and faster promotions is antithetical to what we need for our, and our children’s, health and wellbeing.

This experience also drove home the “us versus them” nature of researchers’ relationships with research participants and their families. There is a great deal of conversation and rhetoric around participant and patient engagement. In most cases, though, that phraseology is often code for recruiting more clinical trial participants to increase sample sizes. In seeing patients only as data points instead of true partners, biomedical researchers are missing a key opportunity to advance and accelerate their work.

My organization Genetic Alliance, in partnership with Private Access, is putting this theory into practice through an undertaking called Platform for Engaging Everyone Responsibly (PEER). The individuals participating in PEER are much more than statistics in a limited disease silo. They share health information and “patient reported outcomes,” from their lived experience, which warrant attention and resource commitment. In one example, we’ve worked closely with a number of sickle-cell patient advocacy organizations, learning from individuals about the aspects of the condition that matter most to them. Combining this with socioeconomic data, we were able to provide the FDA—for its patient-focused drug development program—valuable data from individuals who can’t come to Washington, DC for a hearing, and who are unlikely to use the agency’s web-based system to record comments.

This effort to better engage patients as true experts, is an initiative for which we should have the support of the full biomedical research establishment, instead of resistance. Too many times the experience of people living with a condition is dismissed or overlooked. There should not be an “us versus them” dynamic to pursuing treatments and cures. It remains, since my children were first diagnosed with PXE in 1994, a mystery as to why we’re not all in this together, pulling in the same direction.

It is clear that the status quo, when it comes to drug development, is not working. What will it take for us to wake up and realize that individuals and their families are not only demanding a change, but we’re leading the way to change.

Why we should listen to nurses

Written and submitted by Carolyn Jones

This guest blog post is by Carolyn Jones, best known for her socially proactive photographs and documentary films. Carolyn spoke on the TEDMED stage in 2016, and you can watch her talk here.

I always thought a nurse was a “just a nurse.” They take your temperature, they take your blood pressure and…that’s it. I even went through an elaborate dance with breast cancer and attributed my surviving the miserable, balding, nauseating chemo to the skill of a gifted nurse. And yet, I still had no idea what nurses were capable of, and how well they understood how we tick.

Director Carolyn Jones with nurse Joanne Staha, who helped her through chemotherapy, from the book “The American Nurse: Photographs and Interviews by Carolyn Jones.”

In 2011, I was asked to make a book to celebrate nurses. I thought I would make the book and move on. But when I finished it, I realized that I had only just begun to see nurses’ unique way of looking at the world. I wanted to learn more and dig deeper. So I decided to follow five nurses over the threshold into patients’ rooms and witness what they really do. That journey was nothing like what I expected. Nurses deal with life and death intimately every day. They help people in a way that is so personal, they see us naked, both emotionally and physically, and they guide us out of the depths of pain. They touch us, they comfort us, they care for us. And it doesn’t matter what color we are, what religion we practice or what political party we are affiliated with—nurses care for everyone.

Nurse Colleen Lemoine with her patient at LSU Interim Hospital.

One of the books that I cherish the most is Man’s Search for Meaning. In that book Viktor Frankl survives Auschwitz by identifying purpose. He gets through the horror by discovering what’s personally meaningful in his life. It’s a powerful message. It came to mind as I met nurses—they deal with what matters most in life every day as they usher patients and their families through complicated times.

Nurses throughout history have had an interesting and unique perspective on just about everything you can think of: poverty, war, school lunches, aging, home health, the prison system, hospital efficiency, coal mining, disaster relief, alcoholism, the end-of-life. They understand how these things affect our bodies and our minds.

Tonia works with her patients, inmates in the hospital ward at the Louisiana State Penitentiary.

Seeing the country through the lens of nurses has been a transformative journey for me. After 6 years of looking at issues through their non-judgmental, non-political perspective, I have discovered that we are really missing the boat if we aren’t reaching out to nurses on a regular basis about…well…everything. At least for my part, from now on, I want to consult them and hear their opinions.

Health is weird, we don’t really think about our own health until we feel sick. Then all of a sudden there is an urgency to get answers, to get things solved, but also for someone to take care of us. If we’re lucky, that person is a nurse. The skills required to care for another person are profoundly meaningful when we are hurting and quickly forgotten—like pain—as soon as we feel better. We remember the names of our doctors, but we often don’t remember the names of our nurses.

I’m not sure why we don’t place a higher value on the qualities that nurses embody. When we’re sick and we need help, nothing is more important than having someone there to care for us. Often, that’s a nurse.

Jason cares for his patient Jeff in his home in Appalachia.

Six months into The American Nurse book project, I was interviewing a nurse who uttered this tidbit of wisdom. She said, “Americans think that death is optional.” That idea propelled me to dig deeper into end-of-life issues in our country. I spent two years making a new documentary about the decisions we have to make as life-saving technologies advance even further and our choices become more numerous and infinitely more complicated.

Sister Stephen kisses the forehead of a dying resident, moments after she and the entire nursing staff came together to sing to her.

The making of this new film, Defining HOPE, took me on a journey to discover what makes life worth living. We’re in new territory. How are we supposed to know what to do—for ourselves and our loved ones—as we get closer to the end of life? If you were to ask 100 people how they define “quality of life” you would get 100 completely unique answers. What’s important to each of us is so individualized. But there’s one thing that is universal: no matter how we define it, research shows that we all hope for quality at the end of life. Nurses are in a unique position to help us figure out what that means for ourselves and our loved ones, and to take action by starting the conversation.

Nina Marrero sings with her children at Calvary Hospital in Bronx, NY.

Defining HOPE wants to jumpstart these critical conservations, and we hope that you’ll join us: www.HOPE.film.

Food can fix it! – A non-foodie´s journey to save the world, starting at the plate

Written and submitted by Gunhild Stordalen

This guest blog post is by Gunhild Stordalen, co-founder of The Stordalen Foundation and initiator of the Eat Forum. Gunhild spoke on the TEDMED stage in 2016, and you can watch her talk here.

I am an environmentalist at heart, but a medical doctor by education. Life takes some strange turns sometimes, and in 2009 I found myself serving on the board of one of Scandinavia´s largest hotel companies. There, I started looking for ways to reduce the hotel´s environmental impact as well as to improve the health of guests and employees. Quickly, my eyes focused on food.

Photo credit: Linus Sundahl-Djerf
Gunhild and EAT have hosted several events during the UN General Assembly. In 2016 they led a discussion on urban food systems. Learn more here.

In an average hotel, food and drinks account for as much as 70% of the environmental footprint. Additionally, what we put on hotel restaurant menus can have a huge impact on human health. My question was therefore: “What food could we serve that would be healthier for people, better for the climate and better for the environment?”

I searched the literature, read reports and called experts everywhere. I found lots of papers published on health and nutrition, climate-smart agriculture, organic food and biodiversity. But I found literally nothing that could answer my simple question: “What types of food are both healthy and environmentally sustainable?”

Not being able to find a healthy and sustainable menu solution for some 190 Nordic hotels was quite frustrating. But the fact that no one had the answer for how to sustainably feed a healthy diet to our growing population was straight up shocking!

What we eat and how we produce it is already causing some of our greatest health and environmental challenges. While almost 800 million people are getting too little food, more than 2 billion are getting too much, which causes them to become either overweight or obese. Another 2 billion people suffer from micronutrient deficiencies. Increasingly, poor diets are posing a bigger threat to global health than tobacco, alcohol and drugs.

At the same time, the agricultural sector is the single biggest driver of both climate change and environmental degradation. It causes more than 30% of the planet’s loss in biodiversity and consumes 70% of the world´s fresh water. The meat industry alone is responsible for more greenhouse gas emissions than all the world´s cars, planes and ships combined. And, around one third of all food we produce is either lost or wasted.

Today, we produce enough calories to feed everyone, but those calories are unequally distributed and hugely inefficient. With business as usual, current population growth and diets trend toward more meat and animal-sourced foods; feeding the world’s population will mean increasing food production 50% by 2050.

There is no way we will reach the Paris Climate Agreement or the UN’s Sustainable Development Goals without a radical shift in the way we eat and produce our food. Getting it right on food is our great opportunity to get a lot right for both the health of people and the planet.

In 2013, I founded the EAT initiative with professor Johan Rockstrom and the Stockholm Resilience Center as our main academic partner. Last year, British research charity Wellcome Trust joined us, and together we established EAT Foundation. Gathering international leaders from science, politics, business and civil society, EAT is a global platform that aims to help speed up food systems transformation. Through our partnerships and collaborations, we create pathways and measures to make healthy and sustainable food choices accessible, affordable and convenient—for everybody, everywhere.

Photo credit: Linus Sundahl Djer
The EAT Stockholm Food Forum gathers leaders from science, business, politics and civil society, including chefs and activists. At last year´s conference, Jamie Oliver and Gunhild joined forces to get more food professionals involved in a healthy and sustainable food revolution.

I am a hard-core optimist. Even more so after seeing the rapidly growing awareness on the interlinkages between food, health and sustainability challenges in just these four years since I started EAT. I meet business leaders, investors, politicians, UN agencies and consumer organizations that are all ready for change, and I am thrilled to see healthy, green initiatives and innovations popping up everywhere!

Together, we can fix the food system! Of course, significant work still remains, from setting science-based targets to creating coherent policies, and in implementing new business models that are “all good” and not only “less bad”. But right now, the bottlenecks are not lack of evidence, lack of political will or lack of technology. The main obstacles are lack of collaboration and co-creation. I started EAT to connect the dots. That’s why I am proud to work with leaders and game-changers that work together for a healthier, happier and more prosperous future for all.

I´ve never been a foodie. To be honest, I can hardly cook. But I love food because it represents the closest thing we will get to a silver bullet for healthy people on a healthy planet. Whether you are the most powerful man in the world, sit on the board of a hotel chain or you simply prepare dinners for your family and friends, we all have a role to play. What better way to bring people together for a better world than over great food!

The Hovalin: A real-time synesthesia translator

Written and submitted by Kaitlyn Hova

This guest blog post is by Kaitlyn Hova. Kaitlyn is a professional violinist, composer, full stack web developer, designer, neuroscientist, and core team member of Women Who Code. She is also a synesthete—which means her sensory perception is quite different from what most people experience. Kaitlyn spoke on the TEDMED stage in 2016, and you can watch her talk here.

Most people don’t expect their understanding of the senses to drastically change beyond what we learn in grade school: sight, smell, touch, taste, and hearing. I was 21 years old when I made the jarring discovery that none of my fellow students experienced vivid colors and shapes when they heard musical notes. At first, my classmates called this ability “weird”. Actually, I later learned the official term: “synesthesia”! Finding out that you physically experience the world in such a fundamentally different way can feel isolating. However, it turns out that 1 out of 23 people have some type of synesthesia. What if the study of this ability that was once thought to be “strange” is actually the study of the diversity of the average human sensory experience?

Matt and Kaitlyn Hova, co-founders of Hova Labs

I had always wanted to find a way to accurately convey my experience of seeing sound. I believed that if people could see a simulation of my synesthesia in real time they would be able to make the jump to understanding the nature of it. With this idea in mind, my husband Matt and I co-founded Hova Labs three years ago. One of our first projects was creating a real-time sound → color synesthesia translator violin. Imagine a guitar tuner, but instead of the tuner showing the note “C” it shows what I see when I hear the note “C”, which is the color red. Further, imagine that the brightness of the color is driven by the volume of the instrument being played. (I should be clear, the colors that I experience when I hear notes of music are an experience that is unique to me. If we both hear the note “C” and you see blue but I see red, neither of us is “wrong”, we simply have different associations in our brain.)

Creating a synesthesia-translating violin wasn’t easy—it took us a year and a half of prototyping. We could have easily just strapped LEDs on any violin but we had a VISION: a synesthesia translator glowing violin. First, in order to figure out how to drive the lights inside of our violin, I created a color-coded map of a piano. Additionally, we knew we wanted the violin holding the synesthesia-driven lights inside of it to be translucent, yet at the time (2014), such an instrument didn’t exist (or if it did, it was probably way too expensive). Determined to make our vision a reality, we decided to take our concept a step further. We created The Hovalin: our 3D printable acoustic violin.

Piano keys through the eyes and ears of synesthete Kaitlyn Hova

In October of 2015, we released the Hovalin, and we made it available for anyone to download online along with a short shopping list of materials and “how-to” build instructions. Since the launch, we’ve continued to improve the design. You can see me playing our v3.1 design in my TEDMED talk!

After launching the Hovalin, we soon realized that our project had the potential to be a lot larger than we originally thought. Though today’s music education programs are systematically underfunded, STEM (science, technology, engineering, and mathematics) grants are introducing 3D printers to kids at these same schools. We saw this as an opportunity: why not 3D print your music program?

Creating instruments with 3D printers is a solution that has never existed before. Today, all of the files are available to download for free at hovalin.com. If you have access to a consumer-level 3D printer, the total cost (including plastic, tuning pegs, strings, and bow) is $65. And this is just for one violin. With bulk purchases, we believe that this cost could be reduced drastically.

We already have a pilot program in Oakland, California, and we hope to expand to more schools around the country and the world. We believe that STEM programs can empower kids to solve their problems creatively while supporting the often under-funded music education programs in schools. We attribute our diverse backgrounds in music and tech to creating the Hovalin, and who knows what other great projects will come from kids that are given the chance to think creatively with STEM programs.

If you’re interested in learning more about Synesthesia, I encourage you to check out The Synesthesia Network. Also, you can check out more nerdy violin electronics in this blog post at Hova Labs.