A Global Perspective on FTD: Reporting from the Frontlines of the 9th International Conference on Frontotemporal Dementias in Vancouver

From the 2014 Archives

By Genevieve Wanucha, MGH FTD Unit

In October, I traveled into the warm grey Vancouver mist for the 9th International Conference on Frontotemporal Dementias (ICFTD) of 2014 where 590 researchers gathered in one hotel ballroom to discuss the newest advances in the science and treatment of a class of devastating brain diseases. I brought home some highlights, including big funding and clinical trial news, Dr. Bruce Miller’s forceful advocacy for improved diagnosis, the curious case of the C9 expansion mutation, groundbreaking findings from the UK’s Genetic FTD Initiative and the launch of a US version, tau PET imaging, and, of course, the humanity at the heart of this kind of science.

Members of the MGH FTD Unit in Vancouver.
Members of the MGH FTD Unit in Vancouver.

Frontotemporal degeneration (FTD) affects an underestimated 150,000 people in the United States, although quality epidemiological studies have not been conducted. The term FTD covers a wide spectrum of pathologies that damage the brain’s frontal and/or temporal lobes. Where the disease hits the brain, and how severely, determines a person’s symptoms, which can affect socio-emotional behavior, language, or motor functions.

The ICFTD has its roots in a series of small meetings in Lund, Sweden in the 1980’s and 1990’s, at a time when FTD was known only as Pick’s Disease, hardly diagnosed, and would lag behind Alzheimer’s research for decades. The event is now the premier venue for synthesizing knowledge about FTD, uniting research areas ranging from molecular genetics to physiology, and from social cognition to diagnostic brain imaging. Held once every two years, it’s an unmissable event for an FTD researcher.

“This is the one meeting I insist everyone in my lab attends,” said William Seeley, Professor of Neuroanatomy at University of California San Francisco who has been sharing his lab’s increasingly influential research on the vulnerabilities of certain neurons and brain circuits to bvFTD at this conference for the past decade.

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New job!

I have just started my position at the University of Washington’s Memory and Brain Wellness Center as the science writer. I’ll be writing about advances in the research and treatment of Alzheimer’s, Parkinson’s, and Frontotemporal degeneration at UW. The new website will launch in late summer or early fall, and I’ll let you know when it’s up and running.

The UWMBWC is an innovative model of care that accelerates basic and clinical research, conducts clinical trials, and provides state-of-the-art disease detection and treatment to patients with many forms of neurological disease. The center unites an enormous amount of researchers and clinicians around that common goal. We encompass the UW Neurology and Neurosciences, Integrated Brain Imaging Center, UW Memory and Brain Wellness Clinic, Alzheimer’s Disease Research Center, and the Pacific Northwest Udall Center of Excellence for Parkinson’s Disease Research. I have a lot to do!

Neurodegenerative research, caregiving, and outreach efforts often reveal humanity at its best, and that’s why I’m in this field forever! The view from my desk…

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What’s in a Word?

Semantic dementia illuminates the surprising power of words in emotion perception

By Genevieve Wanucha, MGH FTD Unit

What if you couldn’t remember what the word ‘anger’ meant? What if the concept was totally erased from your mind? If ‘anger’ failed to call to mind the knowledge built over a lifetime of experiences of anger—the sounds of yelling or honking horns, the bodily feelings of seething in silence or lashing out, the visuals of clasped fists or glaring eyes—could you still perceive anger on someone’s scowling face?

diss_imgIf you say yes, you fall in line with the prevailing view in psychology. Ever since the 1960s work of Paul Ekman in Papua New Guinea communities, most emotion scientists have assumed that the ability to perceive happiness, sadness, anger, disgust, and fear on faces is universal across all cultures and doesn’t depend on pre-existing knowledge about emotion. In otherwords, certain configurations of facial muscles are the shared language of humanity.

A collaboration of neurologists in the MGH FTD Unit and emotion researchers in the Affective Science Laboratory at Northeastern University has another perspective to offer, based on a study of emotion perception in patients with semantic dementia. The findings, recently published in the journal Emotion, both challenge widespread assumptions in science and give insight into the unique experience of patients.

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Favorite tweet of the week!

The SIRS: A New Tool to Predict Social Symptoms in Brain Disease

Courtesy May Lesser/ National Library of Medicine
Courtesy May Lesser/ National Library of Medicine

Researchers in the MGH Frontotemporal Disorders Unit have designed a new clinical tool called the Social Impairment Rating Scale (SIRS) that measures the types and severity of social symptoms in brain disease. This investigation into the breakdown of social behavior in neurodegenerative disease exposes the emotional architecture of human personality.

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The Language of Math, A Profile of Dimitri Bertsekas

MIT Stata Center by Dimitri Bertsekas
MIT Stata Center by Dimitri Bertsekas

Dimitri Bertsekas’ forty-four years of contributions to areas such as optimization theory, data networks, dynamic programming, and large-scale computation proves nearly impossible to measure. His 15 books take too long to summarize. But a few words capture his skill and passion: the language of mathematics. He ‘translates’ and ‘formulates’ and ‘expresses’ complex problems into a language of rules and numbers.

As Published in MIT LIDS

After spending his youth in Athens, Greece and earning his masters at George Washington University, Dimitri arrived at MIT in 1969 and completed his PhD thesis in systems science in two years. There, he witnessed a transition from a narrow focus on control theory to a much broader focus on systems analysis and its set of applications, which included data networks and power, communication, and transportation systems. It was a time when computation was primitive. As Dimitri thinks back to them, he chuckles. “At that time, a computer had 64,000 bits of memory—that’s 64 kilobits, not megabits, not gigabits like we have now,” he says. “The idea of moving messages between computers with those capabilities was mind boggling.” Though he coul d have never predicted the complexity of today’s networks, he has always been able to see through to their underlying mathematical structure.

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Improving Media Coverage of Climate Science with Hypothes.is

seaice-fullEmmanuel Vincent has launched Climate Feedback, a new web-based initiative to improve the accuracy of climate science reporting in the media. The first experiment with the method evaluated a recent article in the Wall Street Journal.

As Published in Oceans at MIT

Climate science makes headlines every day: “Shrinking Sea Ice Could Put Polar Bears In Grave Peril by 2100.” “Warming World Could Make it Harder for Planes to Take Off.” “Climate Change May Spark More Lightning Strikes, Igniting Wildfires.” “U.S., British Data Show 2014 Could Be Hottest Year on Record.” “Volcanoes May be Slowing Down Climate Change.” “Polar Ice Sheets Melting Faster, Raising Sea Levels.”

Unfortunately, media coverage of climate science is often inaccurate. Stories may either under- or over-emphasize the risks of anthropogenic global warming. It’s easy to find reporting that cherry-picks data or represents widely discredited scientific concepts. Non-expert readers might not recognize skewed scientific information. Scientists, for their part, are often unsure of whether or how to speak out about public misrepresentation of science.

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