Plenary HallTreat me like a statistic and save my life
Plenary HallTreat me like a statistic and save my life
I used to be an early adopter. In 1993, I quit the best job I ever had, as a reporter at Los Angeles Times, to explore the Internet. The Web was barely dawning. I developed several community-building Web sites, developed multimedia live presentations for SIGGRAPH, Al Gore, and schools and even made it into Esther Dyson’s 2.
But, unlike the typical e-patients at MedX, I have never used the Twitter account I set up years ago, nor any other social media, to talk about my disease: metastatic breast cancer. Thousands of other women nationwide and millions worldwide have remained in the closet out of fear of losing jobs, insurance, boyfriends, or just living a normal life. Others have been asked to leave support groups to avoid depressing the "survivors." An estimated 3-6% of breast cancer research dollars goes to metastatic research, though metastatic breast cancer is the only kind of kills.
After five years of research, which includes interviewing and attending conferences in three countries. I finally want to stand up in the right place, at MedicineX, with the doctors and researchers and patients -- all of whom understand the importance of technology and marketing -- and present a challenge as an physical e-patient. My disease isn't merely in my brain, but in my bones, my lungs, and my liver, as well as brain. And, yet I'm alive, even asymptomatic.
I want to appeal to this community to contribute toward two watershed issues: 1) the need to redefine Komen's 30-year-old "early detection for the cure" marketing to reflect new mammogram studies and other research, and 2) to recognize that gold standard trials will not save our life, nor perhaps even my daughter's, but that we have alternatives through ground-up databases.
Investors can check minute-by-minute changes in the tiniest of public stocks, and compare them to industries and sectors, predicting trends. Why can't we do the same with breast cancer patients, especially given that metastatic patients, with little to lose are famously willing to step forward.
By using a diabetes-style pin prick and radioing results through the Internet, I could track my own trends to therapies, diet, etc., then add them to those of others. Even if there aren't cures, we should be able to take advantage of data that allows us (and our doctors) to compare side effects and performance of therapies by others nationwide. We might even be able to test the effectiveness of alternative therapies and nutritional supplements that oncologists now warn against in case they "might" inhibit the performance of chemotherapy and other agents.
I accept that I probably will die of cancer. I refuse to die of old technology. And, as a journalist, I would be downright embarrassed to die of ignorance.
After growing up in the nearly blank slate that was Pacific Beach, California, Laurie Becklund studied Spanish and English literature, then received a Fulbright to do graduate work at UNAM, Mexico City's enormous public university. Through this experience, she became intensely interested in finding ways to break through the ignorance/disinterest of Americans in other countries. She moved into journalism and received an M.S. in journalism from Columbia University, and returned to San Diego to develop a border beat to begin informing readers about significant issues ranging from immigration to sexual abuse of Mexican "maids," and questionable U.S.-Mexican law enforcement tactics.
Laurie spent most of her journalistic career at the Los Angeles Times, where she covered a wide range of hard news stories,features, and investigations. Much of her time was spent covering war in El Salvador. She spent a year investigating death squads with a colleague. U.S. State Department policy maintained that death squads were "by definition unknowable." Laurie and her colleague began interviewing rightwing political and business figures, drilling down after months until they were able to write about death squads from actual members, donors, military connections, and their own archives. She also did extensive investigations on pesticide poisonings, sexual abuse in Hollywood, and malfeasance/inaccuracies by then "Coroner to the Stars" Thomas Noguchi. Her work has received numerous awards, including a Pulitzer nomination, and a shared Pulitzer for riot coverage.
Laurie left the Times in 1993 to explore the Internet. She founded and published social networking sites NetDayNews and SchoolWire, supporting a national volunteer movement of parents and teachers to wire millions of school classrooms community news sites and help bridge the Digital Divide. Recruited volunteer programmers and columnists ranging from fourth-graders to FCC Chair Reed Hundt. The site was recommended to viewers on the Today Show.
Her favorite project was Associated Student Press (ASP), a program to wire school newspapers nationwide, using content management software she designed to allow student newspapers -- with an 18-million hyperlocal, diverse, readership base -- to network with each other and create unique integrated media "newspapers." Esther Dyson wrote about this project in her 2.0. book.
Laurie also covered the OJ Simpson trial for CBS News, created a number of nonprofit Web-based sites, and designed integrated media projects to brand social concepts she believes are important. She has also co-authored four best-selling books that have appeared in numerous foreign editions, SWOOSH: The Story of Nike and the Men who Played There; Go Toward the Light (a Readers Digest book of the year about a pediatric AIDS case); Between Two Worlds, Escape from Tyranny (an eye-opening memoir of Zainab Salbi, an Iraqi woman, the daughter of Saddam's personal pilot); and edited The Other Story of War: Women's Stories of Hope and Survival, a National Geographic book.
Laurie married to a lawyer-journalist, Henry Weinstein, who teaches law at UCI's new law school. She has a daughter, Elizabeth.