Monday, February 22, 2010

Poetry by guest blogger Dr. Cathy Wolf

Prize4Life guest writer and PALS Catherine Gody Wolf shares two poems and the story of her diagnosis. Dr. Wolf recently appeared on CNN using a new brain-computer interfacing technology (see the piece here).

It was in my modern dance class in the summer of 1996 when I was 49 that I noticed my left foot refused to flex. Then whenever I ran, my left calf hurt. I decided to give my leg time to heal and enrolled in a masters swimming class. My legs did not work too well, but I swam with my arms. By the fall, my left calf had not healed, and, if anything, hurt more. I went to an orthopedic doctor who x-rayed my calf and pronounced the bone sound. He referred me to a local neurologist. I had always been on healthy, ate well and at 5’3” was a slim 115 pounds. I didn’t get sick. The neurologist mentioned amyotrophic lateral sclerosis as a distant possibility. I looked it up in the Merck Manual and was horrified. “This could not be happening to me,” I thought.

But it was. After trips to three high-powered ALS centers and treatment for neuropathy and Lyme disease, in the fall of 1998 I accepted my diagnosis of ALS.

My employer, the IBM Thomas J Watson Research Center, was accommodating. My family, husband Joel and daughters Erika and Laura, were supportive. After I had a tracheostomy and was on the ventilator full time, I hired an excellent lawyer to do battle with my insurance company and won round-the-clock nursing.

I feared the day I would stop working. But I found other interests to take the place of work. I started writing poetry, first political, then about my feelings about ALS. I joined my local MDA fund raiser committee. I wrote occasional articles for Neurology Now. I became involved in the Wadsworth Center brain-computer interface research, and I was the main force in revising the ALS functional rating scale to measure the abilities of people with advanced ALS. Most importantly, I was there for my older daughter’s wedding and experienced the joys of being a grandmother.

After thirteen years of ALS, I have had my ups and downs. My poetry reflects this reality. First, I’ll give you a poem, Resolved, that reflects my attitude on a good day. Then I will give you a poem for a bad day, Routine Routine. The second poetic form is a pantoum, which has a specific pattern of repeating lines, reflecting the tedium of life with ALS.



Resolved
© 2005 Catherine Wolf

I refuse to die
I choose to defy
Prognosis (poor)

I will see
Daughters
Graduate
Marry
Grandchildren

I refuse to die
I choose to defy
Prognosis (guarded)

I must
Love
Help
Work
Dream
Eat chocolate every day

I refuse to die
I choose to survive
Prognosis (good)



Routine Routine
© 2008 Catherine Wolf

Every day I wake at ten-thirty
The nurse puts betadine around my trach, washes it off with saline
The aide pours a half can of liquid food in my feeding tube
They hoist me in the lift

The nurse puts betadine around my trach, washes it off with saline
They put me in my wheelchair
They hoist me in the lift
The nurse brushes my teeth with an electric toothbrush, no toothpaste

They put me in my wheelchair
They dress me
The nurse brushes my teeth with an electric toothbrush, no toothpaste
I am wheeled to my computer

They dress me
I delete spam, read personal email
I am wheeled to my computer
Every three or four hours they pour something in my feeding tube

I delete spam, read personal email
At around nine o’clock I go to the tv
Every three or four hours they pour something in my feeding tube
I watch the tivoed PBS News Hour

At around nine o’clock I go to the tv
Maybe Keith O
I watch the tivoed PBS News Hour
I am taken to bed at midnight

Maybe Keith O
Whether I’m tired or not
I am taken to bed at midnight
There are no holidays, no vacations

Whether I’m tired or not
The aide pours a half can of liquid food in my feeding tube
There are no holidays, no vacations
Every day I wake at ten-thirty

Wednesday, February 3, 2010

Innovating Innovation

Open innovation is inarguably a buzzword. At the very end of December, the Boston Globe ran an article about companies looking outside their walls for innovation. The article highlighted Prize4Life partner InnoCentive, among other examples of the for-profit world utilizing open innovation strategies.

A recent piece in Nature Reviews Drug Discovery discussed open innovation in the context of big pharma (another Prize4Life blog touched on this as well). Examples of incentive prizes pepper the headlines of business journals and popular press alike. Below are some more exceptionally good examples that I’ve found recently:

Several years ago Goldcorp, a gold mining company based in Toronto, Canada, was in dire economic straights. Faced with the possibility of closing, CEO Robert McEwen published Goldcorp’s geological data online and opened a contest—the “Goldcorp Challenge”—to find the best methods and estimates for prospecting. The competition offered approximately half a million dollars in prizes. Prize competitors identified 110 places on Goldcorp’s property, of which 80% yielded gold. Since the challenge launched, the company has found approximately 8 million ounces of gold, valued at over $3 billion. "We had applied math, advanced physics, intelligent systems, computer graphics, and organic solutions to inorganic problems. There were capabilities I had never seen before in the industry," says McEwen of the submissions in a Business Week article. "When I saw the computer graphics, I almost fell out of my chair."

In another particularly telling example, the Harvard Catalyst has followed Prize4Life’s lead. This week, and using federal stimulus money made available through the NIH, Harvard Catalyst launched a challenge with InnoCentive related to curing and treating Type 1 diabetes. Dr. Karim R. Lakhani, an assistant professor at Harvard Business School and one of the collaboration leaders, noted in a Harvard Catalyst release that, “Open innovation is an effective way to solve scientific problems in the business world.” Those who submit the best questions or ideas for the diabetes challenge (as determined by a review panel) will win between $2,500 and $10,000.

In the pharma world, GlaxoSmithKline recently announced an open innovation strategy to deliver medicines for those living in developing countries, partnering with BioVentures for Global Health.

Crowdsourcing has been ever-present in philanthropy lately as well. Initiatives range from the JP Morgan Chase Community Giving Campaign, which enlisted Facebook users to vote on a non-profit nominee to receive a $1 million grant, to Pepsi’s ongoing Refresh Project, which makes monthly grants based on members’ voted preferences.

However, along with this preponderance of open-innovation projects comes new criticism for the model. Scott Belsky writes in Business Week that those involved in crowdsourcing need to rejigger their model so that it empowers participants. "Those involved need to innovate and start harnessing the crowd in more mutually beneficial (and thus sustainable) ways”, he says. Belsky criticizes one of the central tenets of crowdsourcing, the "forces that enable crowdsourcing are being used to get thousands of people to do work for free". Check out some ideas for improvement in his article “Crowdsourcing is broken: how to fix it.”

As open innovation becomes a bigger part of both business and philanthropy, thinkers and entrepreneurs will have the opportunity to innovate on innovation—-to develop and perfect nuanced techniques that harness the power of the crowd in a way that enables, and ultimately helps, all parties involved. Stay tuned.

--By Meghan Kallman