sameAs

an exceptional evening of science, technology and your-kind-of-people (the blog)

This one’s for Jameson

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This month we are highlighting contributions from our sameAs friends around the world, each answering the question “what are you passionate about”. Over the course of the last few weeks, we’ve been lucky enough to be on the receiving end and hear your stories about what inspires you, be it the slightly dangerous hobby, pop music, or brain research. Thank you to each and every one of you whom have lent your voice and submitted (and keep ’em coming!)

The idea stemmed out of a conversation I had with Matt soon after I moved to London over a few pints – in some ways the first informal sameAs – where we shared our stories: how we came to work in this world of science and technology, what our hopes were, how we got our starts.

My passion, to answer the question that Matt and I posed earlier this month, is to make research more efficient. That aim transcends any work affiliation, paycheck, or hat I happen to be wearing on a given day. Let me tell you why.

I’ve never donned a lab coat, or run experiments – I don’t come from the sciences at all. My passion stems from two very important people in my life and a frustration, paired with a desire to help.

As a girl, I watched my grandfather waste away, suffering from a disease I didn’t understand, watching him in less than two years go from a very active man to one that could only blink to say hello. For a long time I was convinced it was ALS. It turned out to be something different – a progressive parasupranuclear palsy – a rare degenerative disease often mistakenly diagnosed as Parkinsons, that completely wore him down unexpectedly before our eyes. Even to this day, we don’t know how that came about, or why an accident spurred such rapid degradation of his body. You can read more about him in this post, written a few years ago.

The other person, Jameson, you’ll hear from below.

This post is for him, one of my oldest friends from my time in Boston, and the reason I decided to leave a career in print journalism to help fix what to me was a frustrating, slow, and unacceptable system. Jameson was diagnosed with Marfan Disease early in his days at Berklee College of Music, not long after we met waiting tables at a local restaurant. The doctors stumbled on the condition by accident, after he suffered a fall while rollerblading in the Back Bay, where they realised the connective tissue had begun to deteriorate around his knees. They then started to put the pieces together bit by bit – realising that his aches and pains weren’t just growing pains, that the 2-inch indentation the size of a fist over his heart was not a freak coincidence, that his chest pains were real.

Jameson let me in during some of the most difficult times in his time trying to understand this newfound burden, through the series of mini-heart attacks he would have throughout the night due to weakening of his heart, to days he could barely play piano – his passion – due to the pain in his hands. He was told by the doctors that he’d be in a wheelchair by his early thirties. Even more devastating, for the first time, his dream of being a professional musician was found hanging in the balance – with a threat of that time being cut short due to a failing body from a disease most didn’t understand, and one that was underfunded.

I remember trying to allay Jameson’s fears over the years, as any good friend would, by saying there had to be an answer (I can be a stubborn thing at times), that we’d find some way to get through this, that I’d play the piano for him should his hands fail – anything that I could do or say to offer him some peace of mind. He lives and breathes music – and taking that away from him would completely shake his core. I was determined to make sure that didn’t happen. He didn’t deserve it. No one does. I poured myself into research, as so many others do when a loved one is in trouble.

I told him I’d find a way to fix him.

I still tell him that to this day, over eight years later. And in some way or another, be it through working directly with rare and neglected disease research groups or advocating better knowledge sharing practices, working in open science or even now through tool development, I’m working towards that each and every day. Jameson is the reason I believe in what I do. Not all of us are fortunate enough to work in a field that we’re truly passionate about – but I am. And I’ve been fortunate enough to come to know others such as Sharon Terry of Genetic Alliance and Josh Sommer of the Chordoma Foundation – two astonishing individuals that share similar passions (each stemming from their own stories). It’s reassuring to know people like those two are out there, pushing the envelope and asking the hard questions.

Jameson currently has the Marfans at bay and is currently a professional musician – a brilliant pianist and rockstar in Florida. I’m thrilled to be able to say that he’s living his dream and still doing what he’s passionate about: writing and playing music.

And I’m still here working to make sure he can do that as long as possible, in some way or another. That’s my passion. Every little step forward helps.

Jameson was kind enough to submit his own video (with his own music, as well 🙂 ) for this month’s sameAs. He’s a remarkable musician, but even more so a remarkable human being and inspiration, and I’m thrilled to be able to tell my story, his story, and have him be a part of this month’s sameAs. Jamie, this one’s for you.

Written by kaythaney

February 1, 2011 at 2:11 pm

Posted in january, music, passion

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From the “kids, don’t try this at home” category …

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Another brilliant video sent along by a friend in California reinventing the modern picnic by … well … blowing things up.

Sometimes, you just have to.

Many thanks to Mike Kennan, (close friend and fellow-adventure-seeker of Josh Bailey … remember Josh?) who sent this short video along with the following note:

“I love food, but I’m a terrible cook.”

We can see why. 😉

Keep the entries coming. We have more to feature all this week, so don’t fret if you missed yesterday’s deadline.

Written by kaythaney

February 1, 2011 at 11:41 am

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Four feet

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Mixing photography and documentary, Mark James sent us his passion: walking and film making!

Walking from my house to the Sea from FourFeetFilms on Vimeo.

It’s incredible to see how technology and the web have evolved to democratise the passions we’ve been profiling here: producing and distributing projects such as this would have been inconceivable even 5 years ago. Bravo for taking the opportunity and running with it (or rather, walking with it), Mark.

These others shorts are worth a watch, too, and you can follow along on Twitter.

Written by Matt

January 31, 2011 at 12:17 pm

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‘I’m passionate about clarity’ – a philosopher’s perspective

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To kickstart your Monday, a thought-provoking message from Nigel Warburton on his passion: clarity.

Nigel is a senior lecturer at Open University, a philosopher, Sci Foo friend, and podcaster extraodinaire. He lends his thoughts on our January topic here in the form of sound bite (or mini-podcast? 🙂 )

I highly encourage you all to check out his absolutely superb podcast Philosophy Bites.

Also, we’re wrapping up this month’s sameAs, but it’s not too late to submit yours. We’ll be writing up some of the other contributions this week and posting them here, so stay tuned. A reminder that our next in person meetup is Monday, 21 February. We’re heading back to the Coach & Horses in Clerkenwell to explore the topic “education”. We hope you can make it.

(And another thanks to Nigel!)

Written by kaythaney

January 31, 2011 at 7:04 am

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For those about to rock, we salute you…

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Perfect for a Friday afternoon, Graham Steel dropped us a line to tell us of his passion, which goes all the way to eleven.

Whilst I am passionate about science related stuff, I am also passionate about writing/recording and producing pop/rock songs.

As Steck from the music community site MacJams, Graham has released well over 50 songs under Creative Common licenses, including his latest opus ‘Castles‘. You can read a lot more about Graham’s magical musical mystery tour in this MacJams interview.

Graham, sameAs salutes you, and your passion!

Written by Matt

January 28, 2011 at 4:09 pm

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From Twitter with Love

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Throughout January, we’ve been asking all our friends a question: what are you passionate about?

We’ve already heard from neuroscientists who love healing people and Googlers who love voltage, but today we take a look at the scientists, technologists, artists, fighters and lovers from Twitter for their passions.

Mark Hahnel from data sharing site Figshare wants to accelerate research:

I have a #passion for trying to rid the world of inefficient science. Its very do-able and we will get there #sameas http://figshare.comless than a minute ago via web

James Philips just wants to make an impact:

Making a massive positive impact (quiet or loud!) #passion #sameasless than a minute ago via web

Cathy loves to create!

what am I passionate about? making things http://bit.ly/ekAAS1 http://bit.ly/h017e4 #sameas #passionless than a minute ago via web

Ian Mulvany from Mendeley get’s poetic:

is #passion not the #sameas solving problems? curiosity dies as we do. From sunsets to sine waves, life’s but the sum of a series of momentsless than a minute ago via web

Paul is no nonsense. He’s getting things done:

Let us know what you’re passionate about: simply post a picture, video or tweet tagged with #passion.

We’ll continue to feature the best here.

Written by Matt

January 23, 2011 at 7:37 pm

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Bradley Voytek: ‘I’m passionate about healing people.’

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Today’s sameAs contribution comes from neuroscientist and open science enthusiast Bradley Voytek, sent to us all the way from Berkeley, CA. Bradley’s submission epitomises what we were hoping to draw in with this virtual event – a passion for what he does that’s driven him to push his limits, something that inspires him day in and day out. If that’s not evident from his note to us, I don’t know what is.

Here’s what he sent in. Do check out the video below, as well …

“I’m passionate about the brain. I’ve made this my life. I’m trying to leverage modern technologies to speed research and discovery by searching through millions of peer-reviewed scientific publications to find links between ideas. Simple idea, such as happiness (link)

Or trying to learn how the whole brain is connected. See this image?

That’s every brain region and their interconnections, built from scanning publications.

I’m passionate about healing people. I chose a PhD over an MD because one discovery could potentially help millions, but as a medical doctor I could only treat one person at a time. That’s a gamble I was willing to make.

I gave a talk at TEDxBerkeley about my work on how people recover from stroke. I reach out to the community and blog and tweet about the research I publish.

Video:

We can use technology to do better science to help those who need it.

That’s what I’m passionate about.”

Us too, Bradley – especially your last point there. Thank you.

Remember, it’s not too late to submit your #passion. For more information, visit sameAs.us or check out my latest post and call for video (see, even I can make a video 😉 ). We hope to hear from you.

Written by kaythaney

January 18, 2011 at 4:52 pm

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