Tuesday, June 28, 2016

I Never Thought I'd Cry So Much Before Lunch

That was the remark of the young man I was sitting next to at lunch. Jennifer Brea was the speaker who brought him to tears.

Jennifer was one of the first TED Fellows in 2009. (See here for more about the TED Fellows). When Jennifer became a TED Fellow, she was an aspiring Ph.D. student in Political Science at Harvard. Then, after a severe infection with a very high fever, she was left with devastating symptoms which amounted to her barely being able to walk.  Gradually she developed neurological symptoms as well. She showed us a slide of her attempts to draw a full circle - it was a crude half circle.

Jennifer gave her talk sitting in a wheel chair. She had several lengthy pauses to collect her breath, or to refer to her talk on her iPhone ('My brain doesn't work like it used to'). Because loud noises are painful for Jennifer, we were given instruction in sign language for applause: wave your hands in the air with spread fingers. The 'applause' was thunderous during these pauses. The TED Fellows were waving their hands wildly, and everyone seemed to lean forward to try to transmit their energy to her.

Here's the rest of Jennifer's story.

As ill as she was, isolated in her home or even her bedroom, multiple specialists were unable to pinpoint the cause of her problems. Eventually Jennifer was handed a diagnosis of conversion disorder, which attributes physical symptoms to psychological stress. Jennifer characterizes it as a renaming of the old concept of female hysteria, or attribution of symptoms arising from a repressed memory of a childhood incident. Her condition was deteriorating and the medical profession was not providing any help at all.

Jennifer says that the Internet saved her.  There, she found a community of people who shared her symptoms. Gradually she was able to figure out she had Myalgic Encephalomyelitis (ME), a disease affecting  15-20M people worldwide and 1M in the US, the majority of whom are women. As well as debilitating physical symptoms, which render some victims bedridden and isolated, it also has neurologic affects to a point where some sufferers can't tolerate sound or tactile stimulation, and experience cognitive losses.

Sadly, people with ME also frequently suffer from a denial and misunderstanding of their symptoms. The disease is badly under- or mis-diagnosed, as was Jennifer. Patients can be disregarded for showing symptoms that are 'all in their head'. Very little research money has been directed to studying the disease, but the scant data points to it being an autoimmune disease triggered by a severe viral infection.

After her self-diagnosis, Jennifer finally found a doctor who prescribed a strong antiviral drug regime, and she is improving. She is no longer restricted to her house because she can now walk short distances. The trip to TED is a huge undertaking for her and she will take weeks to recover. However, the chance to address the TED audience was very important, because she wants to bring attention to ME.

Jennifer made a powerful impression on everyone in the room. She was authentic, powerful, and articulate. She touched everyone deeply (even one scientist who had earlier told me she hated all the 'touchy feely' stuff!). And as my lovely new friend Sam said, "I never thought I'd cry so much before lunch". Neither had the rest of us.

The TED Fellow Program

The TED Fellows program brings to TED accomplished young people from around the world and from a variety of fields who would not ordinarily be able to afford TED. It's become much more than that. Under the very special mentorship of Tom Reilly it has become a tight supportive community.  There are 53 of them here in Banff and their camaraderie is palpable - and loud. At a TED Fellows main stage session, the TED Fellows clap the most and cheer the loudest for their colleagues. And if a speaker hesitates, or loses their composure, the clapping and cheering just accelerates and buoys them along. It's lovely to watch.

The TED Fellows presentations are some of the best of the conference. Future posts will describe some of these talks. But I can't talk about the Fellows without talking about the inimitable Tom Reilly.

Tom  runs the Fellows program. He is burly, energetic, brash, loud, charismatic, and unbelievably funny. He used to give a hilarious stand-up comedy routine roasting the TED speakers at the end of the conference. I miss those days.

But Tom has a serious side and he has hefty responsibilities these days. He does an incredible job with the Fellows. Clearly the sense of community starts with him. All of the Fellows I have met describe Tom as changing their life. He is an extraordinary, inspiring person. He's my hero.

Sunday, June 26, 2016

Diapers and Brain Research

Ed Boyden
MIT's Ed Boyden has seen the connection between diapers and brains.

The big challenge with brains is that the biomolecules in tangled neurons that we want to understand are too tiny and intertwined for study. The polymers in a diaper expand in contact with water.

Boyden's Big Idea is to put those two facts together. Why not insert such polymers into (dead) brain cells, get these polymers to hook onto the desired biomolecules, then douse them with water to get them to swell? As they swell, they pull apart and untangle the biomolecules. And voila! These biomolecules can be studied in detail.

Boyden's hope is that such studies will unveil insights about Alzheimer's, Parkinson's, and other neurological diseases. How cool is that?

TEDx Global Forum

It's called the Global Forum and it is truly global. In my two days here I've interacted with people from Afghanistan, Australia, Bangladesh, Belgium, Brazil, Costa Rica, Egypt, France, Germany, India, Japan, Korea, Mexico, New Zealand, Poland, Serbia, Singapore, South Africa, Sweden, Thailand, Turkey, UK, and lots from across the US and Canada. Everybody here has hosted one or more TEDx events (up to 30 for one person), and they all behave like global citizens. An astonishing number are living outside their home country, the Canadian in Bangkok, the Italian in Japan, the Australian in Singapore, the Belgian in the Netherlands, the Brit in Poland, the German in India, the American in Bangladesh. Even those who still live in their home country have a global perspective and attitude and they're absolutely fascinating and invigorating.

The Forum has featured three major workshop breakouts around Passion, Purpose and Action. Many of the TEDx community are chafing at the bit to do more with the incredible platform represented by TEDx events. The TED team originally expected a handful of TEDx events a year, but there are now about 3,000. There were pictures of some really interesting ones. The one from Jeddah was both disturbing and inspiring: while a screen separated the women from the men in the audience, male and female speakers mixed on stage. I guess the good news is that at least the women got to go but disturbing to see the audience segregated at an event to spread ideas.

Because the TEDx experiment has been so successful, and so many people have several events under their belt already, people are eager to take the platform to the next level. To start with, one of our breakouts was about trying to capture what TEDx does now, and I think a young guy in our breakout room really nailed it "to spread local ideas globally and global ideas locally".

Then, on to what could be next. In the Action breakout session, many themes emerged. There was considerable support for  loosening the rules for TEDx organizers (tricky to do without risking the brand) with the feeling that something like TEDx LAB might let people test different approaches to explore what could work.

My own personal wish is that TED's passion for opening minds would spread beyond those who already think that way. If TED and TEDx could help more people to think with an open mind, rather than based on prejudice and unfounded myths, could it actually help the world be a better place. As one participant in our session put, could TEDx make a contribution to shining light on the pools of ignorance in the world. A lofty ambition, but that's the kind of thinking being bandied about here!

By the way, all of our badges mention three things people should ask us about. I chose Innovation, Travel and Blockchain for my badge. I keep getting asked to explain blockchain. Don Tapscott is one of the speakers here and he is also hosting a breakout session, so I think the requests for explanations will die down quickly once the expert who's written the book has elucidated the subject!