Crowdfunding with Seattle sauce

Forget everything you think you know about scientific research and the starched white-lab-coat image.

Bonnie McGregor is one of those people who have a traditional career with years of publications in peer-reviewed journals. She’s been at the Fred Hutchinson Cancer Research Center in Seattle for 11 years.  But replace your image of her there with her new online presence at the website Indiegogo, where hipsters raise money for movies and putting out rock music. McGregor is raising money for ovarian cancer research.

“I am hoping we can use crowd funding to get our stress management tools (and maybe even the wellness program we’re developing) out to the public too.  When I write grants, it feels like work.  Crowdfunding is fun … It is nice to feel the direct support of the community for my work.” She explains that seeing the response via crowdfunding feels “like people cheering me on.”

In about a week, McGregor and her team raised about $4,000 toward their goal of $10,000. She’s an expert on the relationship of stress to the growth of cancer, both ovarian and breast cancer. Her project is about creating a workbook that women with cancer can use to reduce their stress. When McGregor talks about stress, she isn’t just talking about a psychological reality, but also a biological reality, that the regulation of your genes is influenced by your stress. At her website, for example, there is a “heat map” showing the changes in regulation of certain genes after stress management training that the new program is based on.

Not only is McGregor asking the public directly for money, she’s creating a workbook that patients will use online to practice their stress-management techniques at home between the live visits they make online with their therapists.

“We think this is exciting and important science and we want everybody to hear about it,” she says in a video at the Indiegogo site. She tells her research participants that they are pushing the frontiers of science, and suggests people who donate money can feel a part of that frontier-busting.

katriona-bergen-june-2013

Just across town in Seattle, Katriona Guthrie-Honea is unpacking the boxes of a new biological laboratory for do-it-yourselfers. With adult partners, this 16-year-old helped raise about $6,000 through a website called Microryza for what is called Hive Bio. Guthrie-Honea is just finishing her junior year in high school and has already gone to a TEDMED conference.

Bergen McMurray is the co-director with Guthrie-Honea. The two had the idea of a bio-hacker space where everyone can do biological research and met, literally, when they were both shopping at a hand-me-down event where laboratory equipment was being given away.

Other cities already have bio-hacker spaces, including Genspace in NY, MadLab in Manchester, UK, and La Pailasse in Paris.

The Seattle HiveBio is due to open next month in donated space that is part of Hackerbot in the SoDo neighborhood south of the city.

Crowdfunding for science has critics. A great analysis of some of the newest flavors of money-raising for science is in a blog post by Ethan Perlstein at Microryza. He calls one flavor the “local” style, where specific questions of special interest to communities are financed.

More about crowdfunding for science:

Alan Boyle examines biohacking in Cosmic Log

Biologist explains benefits for outreach

Power to the people

 

 

 

 

 

 

 

 

 

 

Celebrity fuels movie and device awareness

When a famous actress writes about her own mastectomy, the world listens.

Angelina Jolie wrote a story for the New York Times opinion pages about her own genetic risk of breast cancer, based on a mutation in her copy of the gene BRCA1. On June 6, Seattle audiences will get to see a new movie, Decoding Annie Parker, about the Seattle scientist, Mary-Claire King, who spent almost sixteen years discovering that genetic link. Adding to that, a Seattle biotechnology company is sponsoring the screenings of the movie.

Steve Bernstein, the movie’s director, calls the Jolie revelation and firestorm of social media awareness a “tragic serendipity” for his film. He spoke to radio reporter Stan Alcorn, on the show, Marketplace, on May 16. Jolie wrote about choosing to have a mastectomy – as a way to reduce her risk of getting cancer.

In another development tied to Seattle, the biotech company Atossa Genetics is in the middle of the debut of a marketing campaign for their device – called the Forecyte, which will be used to try to diagnose breast cancer earlier than by traditional methods.  They’ve announced they are sponsoring the two screenings of the movie, but would not say the size of their donation to Seattle International Film Festival (SIFF.)

The ForeCYTE device helps pump cells from a patient’s breast milk ducts into a testing container. The fluid is examined in a laboratory for the presence of maligant cells or cells that show pre-malignant signs. Based on that information, Atossa claims to be able to predict the patient’s likelihood of developing cancer. More details are available on their website.

During a phone interview, Chris Destro of Atossa said he did not want to reveal the dollar amount of the sponsorship that the company provided to SIFF. According to the movie’s own information, they are donating a portion of the ticket price for the screenings to King’s UW laboratory.

Atossa is publicly traded on the NASDAQ as ATOS. Company representatives are attending one of the largest cancer conferences of the year in Chicago from May 31-June4.

“We believe that our ForeCYTE Breast Health Test represents a breakthrough in breast cancer risk assessment testing. The ForeCYTE test can provide vital early detection of cancer or precancerous conditions and therefore help prevent breast cancer and save lives. We look forward to presenting the ForeCYTE test’s value at ASCO, the largest gathering of oncologists in the nation,” Destro said, in a news release. He is vice president of Atossa.

There isn’t an obvious link between the movie celebrating the pioneering genetic science of breast cancer and the new device+lab work that Atossa is marketing. Destro explained it this way: “We wanted to honor Dr. King and her contribution.”

There are two genes where mutations are known to change a woman’s risk of breast cancer, and they are called BRCA1 and BRCA2. Scientists believe there may be other genes yet to be discovered that might increase a woman’s risk. Of women diagnosed with breast or ovarian cancer, it is estimated that about 10 percent carry known genetic markers giving them an inherited risk.  Genetic testing pioneered by King allows a minority of women to make life decisions to lower their own risk.

King is the American Cancer Society Professor at the University of Washington in Seattle and, since 1998, a member of the Fred Hutchinson Cancer Research Center. She’s received 13 honorary doctorates including honorary doctorates from Harvard, Yale, Columbia and Princeton. She is a member of the National Academy of Sciences of the USA, the American Academy of Arts and Sciences, and the French Academy of Sciences.

In blog posts to come, I will examine the Jolie awareness spike and what difference it might make for physicians and genetic counselors.

Here are a few resources for more details about the topic:

Memorial-Sloan Kettering Cancer Research Center

Facing our Risk – patient advocacy non-profit

 

Small words – Town Hall talk for Ignite Seattle

Some people in science like to use big words.

You know what I’m talking about. Climatology, prehistoric, proteomics. Or phrases that tie us up in knots.

I’m a fan of small ordinary words. Words that all of us use every day. The great cartoonist Randall Munroe of xkcd created a cartoon about labeling the parts of a Saturn V rocket – using only the most common 1,000 words in English. Hint: upgoer is the best way to describe a rocket if you can’t use the word rocket.

His colleague, Theo Sanderson, thought this idea was so much fun that he created a text editor gizmo where you can try it for yourself – and immediately get the red pen if you accidentally use the wrong word. About 180,000 people have already used the upgoer gizmo and many people post their creations to Twitter using the hashtag #upgoverfive.

Because I am a huge fan of this idea of distilling your science into ordinary words, I volunteered to give a public talk about upgoer at Seattle Town Hall as part of the Ignite Seattle nonprofit project.  The video of that talk is above.

That audience laughed a lot about the examples I gave from a competition. You can read more about that competition at my earlier blog post – “Hair Having animals.”

But here are some thoughtful stories about science writing:

Using metaphors:

http://blogs.scientificamerican.com/life-unbounded/2013/07/09/in-defense-of-metaphors-in-science-writing/?print=true

Write like a human:
American Association for the Advancement of Science advice
A scientist makes fun of scientist writing