Science Insider took another look yesterday at the effects of the budget sequestration on research. After describing the potential harms of the NIH’s recently announced 5 percent budget cut - “part of a larger pattern of declining funding over the past decade” – reporter Jocelyn Kaiser points out another troubling aspect of sequestration:

NIH leaders say that the sequester’s most severe effect is the chilling message it sends to young scientists. In testimony last week, [NIH Director Francis Collins, MD, PhD,] quoted a former student who is finishing a Ph.D. at the Massachusetts Institute of Technology. She’s seen her role models struggle with funding. “I can’t erase the fear that this is my future,” Collins quoted her writing.

“We’re putting an entire generation of U.S. scientists at risk,” Collins warned. “If they go away, they won’t come back.”

Previously: Sequestration hits the NIH – fewer new grants, smaller budgets, NIH director polls Twitter for real-world responses to budget cutbacks and As budget sequester nears, a call for Congress to protect funding for scientific and medical research

Each year the National Science Foundation runs a video contest for young IGERT-funded scientists to communicate to the public about their research, and viewers are encouraged to vote for their favorite videos by liking them on Facebook.

One of the entries in this year’s contest comes from a group of Stanford graduate students who show how the brain plans movement and discuss their work on neural prostheses - biomedical devices for restoring movement to individuals with paralysis or lost limbs. The students, who are all part of the Stanford Center for Mind, Brain and Computation, conduct their work in the labs of electrical engineer Krishna Shenoy, PhD, whose research we’ve written about in the past, and Surya Ganguli, PhD, an assistant professor of applied physics.

The take-away message of the video, student Sergey Stavisky told me yesterday, is that “neural prosthetics are an exciting class of medical technology with the potential to improve the lives of individuals with paralysis,” but that to develop better ones, “we still need to learn a lot about the basic science of how the brain controls movement.”

The video, called “Neural Prosthetics: Understanding Reach Planning,” is worth checking out, as are many of the other entries, whose topics range from “virtual blood vessels” to the use of stem cells to revitalize skeletal muscle. Voting is open until 7 PM Pacific time Thursday.

Previously: Researchers find neurons fire rhythmically to create movement and Stanford researchers uncover the neural process behind reaction time
Via Erica Seigneur from NeuroTalk
Video still courtesy of Sergey Stavisky

I’ve been a fan of Pulitzer Prize-winning science writer Deborah Blum since a colleague gave me Blum’s book “Sex on the Brain” more than a decade ago. (Another reason to like Blum: She teaches journalism at my alma mater.) So I was interested to see a Q&A with her over on the Communication Breakdown blog today. There Blum discusses, among other things, her move from writing news stories to penning books, her propensity to delve into the history of science in her writing, and her decision to start blogging:

CB: You started the Elemental blog on Wired Science in 2010, while still continuing to write freelance news pieces and working on your books. Given all of the outlets that you had for your writing, why start a blog?

Blum: Really it was the reverse process of “The Monkey Wars.” There I wrote a newspaper series and realized that there was a much larger story I wanted to tell, that it justified a book. Here I wrote a book ["The Poisoners Handbook"] and realized there were many smaller stories I wanted to tell – poisons that I still wanted to write about, stories that I’d left out of my book. And I wanted to bring the subject forward – to connect the toxicology of the past with chemical exposures today. That’s really important to me.

Previously: Science writing that’s fun to read and Public Library of Science launches new blog network

“The Power of Two,” a documentary offering an intimate look at the lives of twin sisters Anabel Stenzel and Isabel Stenzel Byrnes and their battle with cystic fibrosis, will be available on the web for viewers in the United States tomorrow through June 30.

After undergoing aggressive treatments during childhood, the siblings graduated from Stanford in 1994 and completed their graduate degrees at University of California-Berkeley. They received three sets of transplant lungs between them and co-wrote a memoir chronicling their transformation from illness to wellness made possible by organ donors. Their miraculous story inspired the award-winning film. Today, the pair work at Stanford’s Lucile Packard Children’s Hospital.

The documentary is being streamed online in recognition of Cystic Fibrosis Awareness Month and to raise awareness for organ donation and transplantation.

Previously: Meet the filmmakers behind “The Power of Two” and Living- and thriving- with cystic fibrosis

If I had to live with chronic pain, I’d be a pain to live with.

I’m a lap swimmer. A few years ago, I developed a pain in my neck (yes, an actual, cliched pain in the neck). It didn’t stop there: It radiated down my arm and moved from my arm to my head like a brushfire. I became totally consumed by the thought of pain, and the longer it lasted the more compulsively I thought about it. I began to wonder if I’d ever be pain free again. Through it all I developed a great sympathy for anyone who has to face chronic physical pain in their daily life.

For me, there weren’t any particular good medical solutions or relief. I wasn’t interested in pain meds so I didn’t go that route. Essentially, I toughed it out using intense massage therapy and switching to a swimmers snorkel so I wouldn’t have to turn my neck each time I gasped for air. I also started vigorously stretching my upper body after every workout. The pain soon vanished.

The memory of that pain is stamped in my brain, and I’ve wanted to revisit the mystery of pain in a podcast ever since that time. I came across a very cool TED lecture by Stanford Medicine’s Elliot Krane, MD, director of pain management services at Lucile Packard Children’s Hospital, and saw that – no surprise with a subject like pain – it’s been viewed nearly 700,00 times.

When I spoke to Dr. Krane I began with a simple question: What is pain? Listen in and you’ll find out not only that answer but also how pain still perplexes him – even though he has researched and treated it since the 80s.

(And if you want more about pain, go back to a 2011 podcast in which I interviewed Sean Mackey, MD, PhD, another of Stanford Medicine’s amazing physician-scientists focused on pain. He treats adult patients.)

Previously: More progress in the quest for a “painometer”, A call to fight chronic-pain epidemic, Relieving Pain in America: A new report from the Institute of Medicine, Elliot Krane discusses the mystery of chronic pain, Stanford’s Sean Mackey discusses recent advances in pain research and treatment and Oh what a pain
Photo by ashleigh290

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; the latest comes from Michael Bihovsky.

I have been experiencing severe physical symptoms for the past decade, since I was 16. These symptoms were only recently diagnosed as Ehlers-Danlos Syndrome, bordering the hypermobility and classical types. Over the years, my symptoms have come to match a relatively “textbook” understanding of connective tissue disorders. In earlier stages, however, my chronic global pain was largely dismissed and my extreme hypermobility was deemed an irrelevance. I arrived at my EDS diagnosis through my own research, and then had my diagnosis confirmed by every subsequent medical expert.

Since then, I have worked to educate physicians and patients alike about the surprising prevalence and effects of this specific disorder, and about the broader psychological implications of any chronic disease.

I have done this largely through the use of musical theater, where I have written and produced musical plays and one short film featuring the stories of people with various “invisible” conditions. My most successful piece, “One Grain More”, is a musical parody that uses humor as a means to give sufferers of food allergies a chance to laugh at their own painful restrictions.

Over the years I have developed and employed a variety of such coping mechanisms, mostly focusing around a philosophy I call, “Live Because.”

“Live Because” is in contrast to what I’ve termed “Live Despite,” which is the idea that people can live rich, full lives in spite of their physical or emotional barriers. “Live Because” takes this a step further by suggesting that in many cases, patients can live a more fulfilling life with their illness than they could ever have done without it.

Ehlers-Danlos syndrome has transformed me from a frequently petty and self-absorbed person into the person I am today (still somewhat self-absorbed, but a lot less petty, and with a clearly defined purpose of alleviating whatever suffering I can). I am better because of my illness, and not just in spite of it.

But this process was, and still is, a journey. Chronic illness is nearly always accompanied by depression, and the need to constantly remain one step ahead of my illness has left me fearful and exhausted. I could never go through this alone. Every person who supported me, and every doctor who believed me and encouraged my quest for answers helped me immeasurably along the way. Perhaps my greatest gratitude is to the remarkable organization Friends In Deed, a pragmatic crisis center in New York City for people with serious illnesses.

A part of me will always be angry; such is the process of mourning the pieces of oneself that are lost to chronic disease. I have learned to accept the duality of being bitter and at peace; ignorant and enlightened. The best physicians have been the ones who guided me along this mourning process, while still laying a foundation of hope for the possibility that I can still realize my personal dreams and ambitions, even if not in the exact ways I had expected.

Michael Bihovsky is a musical theater composer and performer, and an “invisible illness” advocate. He is best known for his viral YouTube video “One Grain More,” a musical parody of Les Miserables about the plight of the food allergy community. Michael has also written an original musical, “Fresh!,” which tells the semi-autobiographical story of a group of college freshmen overcoming physical and emotional adversity amidst the craziness of college, and he is currently writing a book titled “Live Because: The Philosophy of the Broken, and the Journey Toward Wholeness.”

Even if I didn’t know anything about what went into creating Three Fold, Stanford Medicine’s new sculpture by Alyson Shotz, I’d love it. As I wrote in today’s Inside Stanford Medicine, the 56-foot-long sculpture, which hangs from a ceiling in the Li Ka Shing Center for Learning and Knowledge, shimmers in an ever-changing array of iridescent colors. Pretty colors get me every time.

There’s a lot more to the sculpture than pretty, though. Shotz is a widely respected artist. Her works, exhibited in prestigious museums like New York City’s Guggenheim and DC’s Hirshhorn, are engineering feats inspired by scientific concepts - this one, by a CAT scan. As Shotz tells it:

I was very interested to learn that CAT scans image by sections, using a penetrating wave. This seems quite relevant, as my work represents an imaging of space, and the wave illuminating the shape, in this case, is color: the varying wavelengths of light that the viewer will see reflecting off the sculpture.

Shotz has other interesting things to say in a Stanford video, above, where she describes how her creative process reminds her of protein folding:

Proteins achieve functionality when they go from a non-dimensional shape to a folded three-dimensional shape, which is fascinating to me because when I started these drawings the lines are actually non-dimensional and then I expand them out into three-dimensional surfaces which then become functional as sculpture.

While reporting the article I learned that the artwork was born on a computer. I found out that despite its gossamer appearance, it weighs more than 3,000 pounds. (It’s made of about 10,000 pieces of custom-cut plastic, 600 pieces of aluminum and more than 20,000 screws.) And I learned the secret behind the pretty colors: dichroic-acrylic-coated plastic, which not only reflects light but refracts it.

Three Fold is being dedicated this week to the medical school’s former dean Philip Pizzo, MD. If you’re in the neighborhood, it’s worth a look.

Photo in featured entry box, of Shotz overseeing assembly of Three Fold, by Norbert von der Groeben

What can be learned from posts written on online forums by patients – many with chronic disease – and their caregivers?  The online health community of Inspire recently had its five millionth post, and founder and CEO Brian Loew offers a few lessons via Health Care Communication News today:

Patients want doctors to treat them as partners. Patients expect their doctors to listen to them not only about their symptoms, but also about their own perspectives on their condition. To be clear, patients don’t want to play doctor, but many patients—especially those with rare diseases—become highly educated about their condition and have done research which they believe bears consideration. The asymmetry of medical information available to patients versus doctors is almost gone, and today any one of us can go online to learn a great deal about a medical condition.

Patients are less cynical about pharma companies than you’d think. Patients want the medical system to work for them. They want pharma companies to make the drugs that help them and their loved ones. When we started Inspire, we were warned that patients would be overwhelmingly negative about pharma companies. This is simply not what we see. What we do see is a lot of discussion about how to optimize treatment, and a genuine interest among patients to best to benefit from their treatments.

Patients are not online just to vent. In our experience, patients seek three kinds of support: emotional, scientific, and practical. Many patients get scientific support from their physicians and online encyclopedic sources. But they are also hungry for practical information to improve their health, and they gather a lot of this information from their peers online. In two recent Inspire surveys—one of psoriasis patients, and another patients with the rare disease neurofibromatosis—each group said the primary reason they participated in online groups was to research the best available treatments. Emotional support and empathy are important, no doubt. But many patients share crucial practical information that only fellow patients know.

Previously: Experts by experience: A year’s worth of patient stories, Doctors: Please have “ears that hear” and Zebras with different stripes: One patient’s story

When babies are born with serious health problems, physicians’ main goal is to keep them alive. Thanks to decades of advances, such as support for preemies’ underdeveloped lungs and surgical procedures to correct complex birth defects, doctors can now save many babies who would once have died.

But some of these tiny survivors of high-risk birth still suffer permanent developmental problems. It’s only recently that physicians have begun to understand how to protect fragile infants’ developing brains.

As I describe in today’s issue of Inside Stanford Medicine, Lucile Packard Children’s Hospital recently became one of the first hospitals in the country to devote a section of its neonatal intensive care unit to specialized neurologic care for newborns. The new “Neuro NICU” will treat babies at risk for neurologic injury, including preemies, full-term infants deprived of oxygen during birth, and babies with congenital heart defects, who may receive too little oxygen in utero.

But knowing how to treat newborns’ brains is tricky because they change so fast, the story explains:

“The challenge and exciting thing about treating these tiny babies is that the brain is developing on a literally day-by-day basis,” said Courtney Wusthoff, MD, Packard Children’s neonatal neurologist.

Fortunately, new research findings and brain-monitoring technologies are helping doctors better understand infants’ immature nervous systems. For instance, they now have the tools to detect seizures that would once have gone undetected:

“In the past, it’s been assumed that you could just tell by looking if a newborn was having a seizure,” Wusthoff said. But it turns out that 80 to 90 percent of seizures in this age group cause no outward changes. “Newborns’ brains are not developed enough to show on the outside what’s happening on the inside.”

Wusthoff and her colleagues anticipate that the next several years will give doctors even better ways to understand and care for babies’ brains.

Previously: Increasing breast milk feeding rates for preemies at California hospitals , A look at the world’s smallest preterm babies and Advancing heart surgery for the most fragile babies
Photo of Jackson Thomas and Packard Children’s NICU nurse Diana Powell courtesy of the Thomas family

The Big Data in Biomedicine conference kicks off at Stanford this week. The event, which will be held at the School of Medicine’s Li Ka Shing Center for Learning and Knowledge, is bringing together leading figures from academia, industry, government and philanthropic foundations to discuss the burgeoning opportunities for mining the vast amounts of biomedical data housed in public databases. Here’s a look at the schedule.

For those unable to attend the conference in person, the event will be webcasted via the Big Data in Biomedicine website. Throughout the three-day event, we’ll also be live tweeting the keynote talks from Anne Wojcicki, CEO and co-founder of personal-genetics company 23andMe, and David Ewing Duncan, author of Experimental Man, as well as other proceedings from the conference. You can follow the tweets on the @SUMedicine feed or by using the hashtag #bigdatamed.

Previously: Obama’s new open-data policy aims to boost access to federal data for entrepreneurs, researchers, Stanford computer scientist shows stem cell researchers the power of big data, Atul Butte discusses why big data is a big deal in biomedicine and Stanford and Oxford team up for conference on “big data’s” role in biomedicine
Photo by Wellcome Images