Cafe Scientifique

Where are the Cures? Accelerating New Treatments for Multiple Sclerosis & All Diseases

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By Scott Johnson, president and founder of the Myelin Repair Foundation. Listen to Mr. Johnson speak live on this topic at our next Cafe Scientifique series on Thursday, September 27, 2012 at 7 p.m.

Just like millions around the world and perhaps many of you, I am a patient. I was diagnosed with multiple sclerosis over 30 years ago. At that time, I was told there would be a cure in 30 years. If I were diagnosed today, I would be told the same thing.

My frustration due to the lack of a cure for multiple sclerosis has led me to investigate the incredible challenges facing the drug development process for all diseases. Very few diseases have effective treatments or cures, and no neurological disease has a cure, to date.

You may be as surprised, as I was, when I uncovered these statistics associated with the medical research world, one that results in very few new drugs for patients year after year:
• Over $139 BILLION U.S. dollars are invested annually in medical research
• And over 800,000 peer-reviewed scientific papers are published each year
• The result = Only 30 new drugs were approved by the FDA for all diseases in 2011

Having investigated the incredibly expensive yet inefficient process of new treatments reaching patients, I have made it my mission to bring patient-focused medical research to the forefront. Utilizing my business background as a consultant and a startup entrepreneur in the Silicon Valley, I established the Myelin Repair Foundation (MRF) with no healthcare or science background. Using the goal-oriented approach from the business world, we are defining a new collaborative research model that connects and coordinates academic scientists, biopharmaceutical companies and all of the other participants within the therapeutics development continuum. Our goal: To accelerate clinically-relevant science into a new myelin repair drug for multiple sclerosis by 2019.

My hope is that we will not only accelerate the development of a myelin repair drug for MS, but the Myelin Repair Foundation’s new collaborative research model will be widely adopted to accelerate new treatments for all diseases. By bringing effective treatments to patients safely and quickly, this new approach significantly impacts the future of healthcare by minimizing patient suffering, disability and high healthcare costs.

The barriers within the current, multi-step scientific research process can seem overwhelming, but these are challenges, I learned, that are not impossible to overcome. At the Myelin Repair Foundation, we hope to improve the lives of patients who face a bleak future of waiting endlessly for effective medicines or cure for disease. We envision a new future for patients, one filled with hope and good health.

For a brief overview of the challenges facing the industry in new drug discoveries for disease cures, and our unique solution, please view our brief video:


A Plan for Clean, Sustainable Energy Worldwide in 20-40 Years

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By Mark Z. Jacobson, PhD, Director of the Atmosphere/Energy Program and Professor of Civil and Environmental Engineering at Stanford University

Global warming, air pollution, and energy insecurity are three of the most significant problems facing the world today. My upcoming talk at Stanford Blood Center’s Café Scientifique on 3/29/12 discusses a plan to solve the problems by powering 100% of the world's energy for all purposes, including electricity, transportation, industry, and heating/cooling, with wind, water, and sunlight (WWS) within 20-40 years.

The plan reviews and ranks major proposed energy solutions to these problems while considering impacts of the solutions, such as on water supply, land use, resource availability, reliability, wildlife, and catastrophic risk. It then evaluates a scenario for powering the world with WWS technologies while considering materials, transmission infrastructure, costs, and policies.

Due to the efficiency of electricity, such a conversion reduces world end-use power demand by ~32% and U.S. power demand by ~37%. The solution requires only ~0.4% of the world's land for footprint and ~0.6% for spacing, only token amounts of water, is not limited by materials, and is economically competitive with conventional fuels and less expensive when externality costs are accounted for. Multiple methods exist of ensuring reliability of electric power supply.

The plan calls for all new energy to be WWS by 2030 and remaining non-WWS infrastructure to be eliminated by 2050. Barriers to the plan are political and social, not technical or economic.

My study (see Energy Policy, 2011 parts 1 & 2 found here) concludes that powering the world for all purposes with WWS electric power technologies and a conversion from combustion to electricity and electrolytically-produced hydrogen is the cleanest and safest method of solving these problems.

Relevant papers can be found here.

Living with Type 1 Diabetes

By Marina Basina, M.D., a diabetes expert and Clinical Assistant Professor, Medicine - Endocrinology, Gerontology, Metabolism at Stanford University. Dr. Basina spoke on this topic at a recent Cafe Scientifique at Stanford Blood Center.

Type 1 diabetes is an autoimmune condition in which the body’s immune system inappropriately destroys the insulin-producing cells of the pancreas. Insulin is a key hormone which moves glucose into the cells and allows it to be utilized for energy and growth. Without insulin, glucose rises in the bloodstream, causing an abnormally high level of sugar in the blood.

Individuals with type 1 diabetes are faced daily with the challenge of self-managing this demanding disease while simultaneously facing the challenges of daily life that everyone with or without diabetes shares. Diabetes self-management includes a variety of activities: multiple self-injections, checking blood sugar levels, eating carefully, considering food choices, adjusting insulin doses to cover carbohydrates, watching for the symptoms that may indicate hyperglycemia and hypoglycemia, taking action if necessary to correct blood glucose fluctuations. Diabetes is a 24-hour/day, 7-day/week, 365-day/year condition. There are no days off with type 1 diabetes. Anyone who has type 1 diabetes will likely tell you that it is a difficult, demanding and challenging condition, requiring daily attention, it is upsetting, and it never goes away.

Diabetes care is rightfully considered one of the most psychologically and behaviorally demanding of the chronic medical conditions. Therefore, it is common to have feelings of anger and frustration in relationship to the diagnosis of diabetes. And it is normal to have strong emotions but, at the same time, it is very important to understand diabetes and to be able to adjust to daily challenges, and to manage it effectively.

A person’s emotional needs are an important component of overall health and an integral component of diabetes management. Stress levels can be compounded day after day just by living with diabetes. It is undoubtedly more difficult to adhere to the treatment plan when you feel physically and emotionally distressed.

The following factors have been found to make it hard to adhere and maintain daily blood sugar control:

- The regimen is demanding
- The regimen is unpleasant
- Improved control may result in more frequent hypoglycemic episodes
- “Going by the book” does not guarantee the results
- Feeling different and isolated as a person with diabetes may deplete motivation
- No direct positive rewards, but rather longer term benefits (preventing complications) makes it difficult to stay on track
- Demands of self-management frequently cause psychological problems, such as anxiety and depression.
- Diabetes “burnout” – psychological condition characterized by chronic frustration and feelings of failure, which may negatively affect glycemic control via the effects of distress on self-care behaviors.

The ancient Greek philosopher Epictetus stated, “People are not disturbed by the things that happen to them, but the views they take of them”.

The good news is that everyone can learn to manage diabetes, reduce the risk of long-term health complications, and live well with diabetes. As one individual with diabetes said, “So it is a pain! Diabetes is not easy, but when you make diabetes management a part of your daily rituals, over time the tasks become a part of your routine”.

A note to those living with type 1 diabetes

It is important to remember that perfection is not the goal. No person with type 1 diabetes can keep their blood sugars in the normal range all the time. When you have a bad day, blame the diabetes but try to understand what went wrong, give yourself some slack and make an attempt to improve the next day. An example of a good attitude is, “Good that I checked my blood sugar, because I was not aware that I was running high. I can now take action”. One psychologist said that he encourages his patients to use humor to handle the diagnosis as well as deal with tension of everyday life with diabetes – the personal and relationship challenges. Management of type 1 diabetes requires the person to view himself as a member of a healthcare team, as the most important person on that team because the individual with diabetes will be doing most of the work with the help and guidance of others, such as healthcare professionals. It is extremely useful to participate in support groups and exchange the experiences with others.

Living a life with diabetes is challenging, but you are not alone. There are approximately 285 million people worldwide who like you, live with diabetes and face similar challenges. There are many therapies that make it possible to manage diabetes effectively, but how you feel about diabetes is an important component, and we hope you, like others, will be able to say, “I have come to accept that it is a part of me, rather than a series of blood sugar numbers and lab results. I know that I am not alone, and I can think about diabetes in a more healthy and effective way”.

Sleep Disorders: Everything You Always Wanted to Know but Were Afraid to Ask

By Kevin O'Neill, Business Development Specialist, Stanford Blood Center

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My interest in sleep disorders took off when my daughter, Danielle, complained about my loud snoring for the umpteenth time two years ago. However, that time she added that I had an unusual pattern: loud snoring, silence, then pig-like snorting. When I promptly relayed this report to my physician, she was writing a prescription for a sleep study on me before I finished Danielle’s description! During the first hour of evaluation, I had 90 episodes of sleep apnea, and then averaged out at 30-40/hour for the rest of the night. The thought that hypoxia had to jump start my breathing 300 times/night for God knows how long makes me wonder why I’m still alive!

Given the remarkably high occurrence of this relatively recent sleep disorder discovery, I thought covering the topic of sleep as part of our Café Scientifique series would certainly be relevant to our community. Having William Dement, MD, the “Father of Sleep Medicine” on the Stanford campus willing to speak here was most fortuitous.

The author of “The Promise of Sleep”, Dr. Dement started the world’s first Sleep Disorders Clinic which introduced all-night polysomnographic examination of patients with sleep-related complaints, medical responsibility and management of the patient, and objective assessment of the relationship between nighttime sleep and daytime function.

At our May 2011 Café Scientifique, Dr. Dement discussed the importance of sleep and the consequences of sleep deprivation, narrowing in on three major sleep disorders; insomnia, narcolepsy and obstructive sleep apnea (OSA) and best treatment practices. He also shared his personal challenges with insomnia.

It is my hope that his knowledge on the subject will alert potential sleep disorder sufferers to seek treatment and cure, so as to live longer and healthier lives.

Click here to listen to the podcast from his talk (scroll to "Past Events").

Lessons on Stress From Wild Baboons

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By Kevin O'Neill, Business Development Specialist, Stanford Blood Center

After waiting for a year because of his packed speaking engagement schedule, we recently had the privilege of hosting Dr. Robert Sapolsky, PhD at our Café Scientifique series for a standing room only audience. He remarkably holds positions in four Stanford University departments: Biology, Neurology, Neurological Sciences, & Neurosurgery. He has published four acclaimed books, has received numerous prestigious national science awards, and was featured in a National Geographic special on stress.

Dr. Sapolsky’s talk, entitled “Stress, Coping, & Health: Lessons from Wild Baboons”, was drawn from his field studies over 30 years living with wild baboons. He was introduced to the habitat by a departing researcher. Initially, the baboons would curiously circle him from a distance of 500 yards, gradually gaining trust & proximity. Ultimately he acquired intimate knowledge of the personality traits and dominance characteristics of individual baboons within their troops. This enabled him to finally dart the baboons in order to draw blood samples that he analyzed from a stress perspective. Dr. Sapolsky drew parallels between stress-causing events in the lives of baboons and those of humans, sharing that “loner” baboons’ blood profile correlated closely with that of a depressed human. One was left with the impression that Dr. Sapolsky had barely scratched the surface of his vast knowledge of baboons, science, health, and its implications for healthier human lives.

For a short video on Dr. Sapolsky’s study of baboons and stress, click here.

You may also visit our website to hear the podcast from his Cafe Scientifique talk. Under "Past Events", scroll to January 27.

The George Bailey Effect

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After pregnancy complications in the spring of 2000 required Lauren Larsen be transfused with 200+ units of blood, she embarked on her current direction as a crusader for volunteer blood donations. In this role she has spoken at more than 200 national and regional transfusion medicine conferences, service organization meetings, and blood center events.

On Thursday, March 31, Lauren will be joining us as guest speaker at Café Scientifique to share the heartfelt stories encompassing the “ripple effect” inherent in every blood donation. Here, Lauren writes about one example of this effect.

While reading the paper one morning, Manuel, a 30-something Mexican immigrant, learns that there’s a local blood shortage. Having never donated blood before, Manuel decides to “help my fellow Americans.” Afterward, he describes the experience as “incredible,” and from that day forward, Manuel is a regular blood donor – every eight weeks.

In 2000, a new mom goes into multiple organ failure and uncontrollable bleeding shortly after an emergency caesarian section is performed to save her baby’s life. Pints of blood are pumped into her body as fast as her veins can accept them. One of those pints is Manuel’s. Several weeks later, Manuel’s next blood donation appointment comes up and – again – the new mom receives his blood. She leaves the hospital after six weeks with a new mission: to help recruit more volunteer blood donors so that others can be given the same second chance at life she was given.

In 2004, the new mom returns to the same hospital that had treated her and walks into a room filled with news cameras and people. Seated in the first two rows are 22 of her actual blood donors from years earlier. Among them is Manuel, who has a bouquet of flowers in his lap – a gift for the woman whose life he helped save. When he’s called to the podium to meet the recipient of his blood, he embraces her, then her husband, and then their daughter, now 4 years old.

Years pass and the recession hits, forcing many to foreclose on mortgages they can no longer afford. Among them is Manuel. The stress over losing his family’s home manifests itself as serious physical ailments, and he is hospitalized. His wife pleads with him to forget the home, that the health of their family is more important than any material possession, houses included. He remains despondent, but there is one memory that pulls him through his darkest days: giving a hug to that little girl who has a mother – thanks to him. It takes months, but Manuel is able to overcome his health issues and move on with his life.

That Christmas, the new mom receives a card from Manuel announcing that he’ll soon be a grandfather. She sends baby gifts for him to pass along to his pregnant daughter, but when they arrive, Manuel sets them aside. “I’m saving the gifts for the baby shower,” he writes to her. “Before giving them to my daughter, I’d like to tell everyone how our two families are connected through blood donation.” The new mom reads this, and cries. Yes, she thinks, we are connected. Then she laughs as she pictures everyone at the baby shower all heading down to the local blood center together to give blood when the party ends.

Thinking back on this story, I am reminded of the scene from “It’s a Wonderful Life” – my all-time favorite movie – in which George Bailey begins to understand the depth of connection he had to so many people, and vice versa. “Strange, isn’t it?” his guardian angel, Clarence, says to him. “Each man’s life touches so many other lives. When he isn’t around he leaves an awful hole, doesn’t he?”
This is a lesson I know well – ever since receiving more than 200 pints of blood 10 years ago during the birth of my daughter, Clare. And I’ll forever be grateful that Manuel’s life touched mine.

Lauren Ward Larsen is the author of “Zuzu’s Petals: A True Story of Second Chances,” which shares her story of becoming a 200-pint blood recipient and the unexpected life that unfolded as a result. She is also the president and chief ambassador of the Foundation for America’s Blood Centers. She can be reached at laurenwardlarsen@me.com, or via her website.


Guest Author, Cafe Sci Speaker Thea Cooper Recounts Evening at SBC

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What follows is a piece written by Thea Cooper, co-author of Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle. In her book, she tells of the amazing story that led to the medical breakthrough that was virtually lost to history. In 1920, Frederick Banting, an orthopedic surgeon, discovered a life-saving solution to a problem that had confounded scientists for centuries. Less than two years later, the fourteen-year-old diabetic daughter of the U.S. Secretary of State, Elizabeth Hughes, became one of the first recipients of an experimental drug called insulin.

We were fortunate to have the opportunity to host Thea at one of our recent Café Scientifique events. Here, she writes of a special experience she had during her talk and how it all ties together with her book.

A few weeks ago I had the privilege of speaking at Café Scientifique at the Stanford Medical School Blood Center about Breakthrough: Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle by Thea Cooper and Arthur Ainsberg, published by St. Martin’s Press.

I was warmly welcomed by Marketing Manager John Williams and greeted by an extremely educated and engaged audience. I even learned some things during the Q & A! During the talk, I could not help but notice a wonderful mother and daughter team in the audience -- and they were, clearly, a team. Afterward I was glad for the opportunity to meet them. (Let’s call them Tamara and Tina -- not their real names). Tina is alive because of the insulin pump on her hip, and because of the devoted and daily effort of her mother. Tina is ten years old – almost the same age Elizabeth Hughes was when she was diagnosed in 1919. This encounter brought home to me yet again both how far diabetes research has come and how far we have to go. The experience affected me deeply; weeks later I continue to think about our conversation.

November is American Diabetes Month. Nearly 24 million Americans, or eight percent of the population, have diabetes, according to the American Diabetes Association. Of these, five to ten percent have type 1 diabetes. The ADA estimates that about 24% of those with diabetes don’t know they have it. And a growing number of Americans – some 57 million -- have a condition called pre-diabetes. The Centers for Disease Control just announced that if current trends continue, one in three Americans will have diabetes by the year 2050.

Throughout the book tour I have been humbled to meet many diabetics and those affected by diabetes. This latter group includes family, friends and neighbors, nurses and doctors, educators, researchers, and pharmacists, among others. Tamara and Tina -- you know who you are. If you’re reading this, I salute you.


Stephen Schneider, a Noble Nobel

By Kevin O'Neill, Business Development Specialist, Stanford Blood Center

Stanford Blood Center had the privilege of hosting Dr. Stephen Schneider at a bi-monthly Cafe Scientifique discussion to share his unique perspective as both a climate studies expert and a cancer patient. As the host, I was on the lookout to greet and orient him to our protocol. I was surprised to discover him at a break room table partaking of lab staff pot luck! I found his informality and spontaneity enchanting, as did the staff!

Having read his “The Patient from Hell” treatise on his experience going through successful cancer treatment, I was well versed in the chronology of that ordeal. What most impressed me about its insights was two fold. First, because of his credentials as an accomplished scientist & a Stanford professor, he wasn’t intimidated to question his physicians about the logic behind his treatment protocols. Although initially surprised to be challenged by a patient, his doctors, in time, did grapple with his reasoning, and ultimately changed how they executed certain treatment protocols. Secondly, his winning reasoning was based upon rudimentary logic, leaving me with the question as to why illogical protocols would have been followed for so long seemingly without challenge from within or without the medical community.

Regarding his Nobel Prize-winning work on climate change, his pictures and presentation of data were irrefutably persuasive. However, my new learning on this topic that evening came in the area of understanding the opposition to the case for the phenomenon of global warming. He pointed out that with the common acceptance of the global warning case, oil-rich nations stand to lose not million of dollars, nor billions of dollars, but trillions of dollars. This truth underscored the enormous challenge facing the scientific community in its quest to remedy this ominous course our planet is heading towards. Stephen Schneider made profound contributions to the areas of cancer treatment protocols & the case for global warning that I am familiar with. No doubt these represent only a fraction of his scientific contributions to humankind. His loss will be manifest across his innumerable areas of professional interest.

For a closer look at Dr. Schneider's life and accomplishments, see this article, beautifully written by John Unger Zussman, PhD.

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