Boing Boing Charitable Giving Guide 2013

Here's a guide to the charities the Boingers support in our own annual giving. As always, please add the causes and charities you give to in the comments below!


Electronic Frontier Foundation
Could there be a year that's more relevant to the EFF? As Edward Snowden has made abundantly clear, there is a titantic, historic battle underway to determine whether the Internet is there to liberate us or to enslave us. EFF's on the right side of history, and I figure giving them all I can afford is a cheap hedge against the NSA's version of the future. —CD



Creative Commons
CC continues to make a difference -- this year, they released the 4.0 version of their flexible licenses, a major milestone. More than anyone else, CC has reframed the way we talk about creativity and copyright in the Internet era, providing practical, easy-to-use tools to make it possible for creators and audiences to work together in a shared mission of creating and enjoying culture.—CD

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'Alternative cancer care' provider Stanislaw Burzynski accused of selling false hope in USA Today investigation


Stanislaw Burzynski, an internist, has treated patients with experimental, unapproved cancer drugs at a clinic in Houston. (Photo: Michael Stravato for USA TODAY).

An extensive investigative story in USA Today finds experts questioning why the FDA allows Stanislaw Burzynski, a doctor in Houston, Texas, to continue to sell his "alternative cancer treatment" to vulnerable patients and their families. Burzynski calls his miracle drugs "antineoplastons," and first synthesized the sodium-rich compounds from blood and urine "collected from public parks, bars and penitentiaries." They haven't been approved by the FDA, but he has also "prescribed them as a treatment for AIDS, lupus and other conditions."

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A cancer Mona Lisa

"A tumor changes your life. Not the value of your life. "

The Italian cancer nonprofit Fondazione ANT modified Leonardo Da Vinci's portrait of Mona Lisa for a new cancer awareness campaign. "The objective is to restore the bravery and dignity of life," says the NGO's spokesperson. Below, the poster.

[HT: Jesus Diaz]

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Phoenix TSA makes breast cancer survivors remove their prostheses

The Arizona Republic has found a large cohort of elderly and retired people who claim to have been abused by TSA staff at Phoenix's Sky Harbor airport. The passengers claim that they were required to remove their prostheses (particularly prosthetic breasts worn by cancer survivors), and that their objections were met with threats and hostility.

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Avant-Garde composer Fred Ho, who has cancer, talks about his ‘Sweet Science Suite’

The New York Times speaks to experimental music composer Fred Ho about his “Sweet Science Suite,” which follows the life and work of boxer Muhammad Ali. Mr. Ho, 56, has advanced colorectal cancer. “I’m hoping to be well enough to do the solos in the second movement,” he says. “But I don’t know. Right now I’m so weak and tired that I can only practice 10 minutes a day. But I’m still keeping up my chops.”

National Cancer Institute director warns staff of increasingly dire effects of shutdown on science


National Cancer Institute headquarters, Bethesda, Maryland.

Harold Varmus, director of the National Cancer Institute, sent this email today to "NCI staff, grantees, advisors, reviewers and others," warning of increasingly damaging effects the ongoing federal government shutdown will have on cancer research and treatment at NCI. Even worse than the litany of known, present harm, is this grim prediction: the damage won't end when the government reopens.

A copy of this email was provided by a Boing Boing reader who was one of the recipients:

I am writing to keep you abreast of the ways in which the National Cancer Institute (NCI) and its extramural and intramural research programs have been --- and are likely to be --- affected by the current shutdown of the federal government. And I am also writing to ask for your help in responding to the difficult situation that we are likely to face when the government is reopened.

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This mom with a rare form of cancer can't get treatment she needs due to government shutdown


Michelle Langbehn. Photo: Natural Grace Photography, via Washington Post

Michelle Langbehn has a rare form of cancer that affects about 1% of U.S. cancer patients. She was diagnosed in April 2012, shortly after giving birth to her daughter. She was 29.

She spoke to the Washington Post about how the government shutdown has affected her. The short version: she can't get the life-saving treatment she needs; a clinical trial that provides an option in a case where other more well-established treatment protocols have failed.

The Washington Post's Sarah Kliff explains:

After nine months of chemotherapy, she and her doctor began looking into other potential treatment options, including a trial at the National Institutes of Health. Langbehn began filling out the paperwork to apply last month. Things were going well until late September, when she got a call from the NIH: If the government shut down, the trial would not accept new patients. Now, she is among an estimated 200 patients turned away each week from clinical trials there. Langbehn has started a petition asking the government to re-open the treatment option.
“This was not supposed to happen. Nobody wanted the shutdown to happen," says Langbehn. "If I had a message, it would be that lives are at stake.”

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Meet two cancer patients whose treatment is on hold due to US gov shutdown: an 8yo girl, and a father of 3


Maddie Major, 8, has leukemia. Image: A still from the CBS news report.

Maddie Major has leukemia. She's 8 years old, and she's had it recur four times. The clinical trial she now needs, having exhausted all other options for treatment, cannot be approved by the FDA because the FDA has been shut down, along with the rest of the federal government.

“I am completely blown away by how callus and how carelessly they’ve just kind of used us as their pawns to push their own agenda,” says her mom. From a Baltimore CBS TV affiliate's report:

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US gov shutdown may mean some kids with cancer won't be treated, CDC's outbreak detection programs also halted


NIH Clinical Center [Wikipedia]

The ongoing federal government shutdown in the United States affects national health services in ways you may not realize, including cancer treatment activities at the National Institutes of Health, and disease outbreak detection programs at the Centers for Disease Control and Prevention.

For as long as the shutdown continues, the National Institutes of Health will turn away about 200 patients each week from its clinical research center, including children who have cancer. All existing patients at NIH will be treated, but no new patients will be admitted, and no studies.

NIH director Francis Collins explains how the slow-motion political disaster affects the nation's federal medical research facilities in this WSJ interview (paywalled). He told the Journal that about 200 patients per week who would otherwise would be admitted to NIH's Clinical Center in Bethesda, Maryland, to participate in clinical trials will be turned away for as long as the shutdown lasts. That number includes an estimated 30 children per week, most of whom are cancer patients.

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People who've never had leukemia show signs of immune battles that fought it off

Far more people have cells that briefly behave in cancerous ways then ever actually develop cancer. Most of the time, those cancerous cells are destroyed before they can do any real damage, and scientists can see evidence of this by looking at echoes of past battles with the immune system. If you've had chicken pox, some of the immune cells that fought off that disease will stick around, ready to more-quickly mount a response against a repeat attack. The same seems to be true with certain kinds of cancers. Scientists found immune cells in healthy people that appear to be primed to attack leukemia — leftover remnants of the body's previous, successful skirmishes.

Study: Obese cancer patients sometimes don't get enough chemo, which harms survival odds

In the Washington Post today, a story about an interesting problem in oncology: obese patients sometimes don't get enough chemo for their body weight. And when an insufficient dose is given, this increases the risk that cancer will continue to progress, and kill the patient. [HT: Steve Silberman]

With new health moonshot venture 'Calico,' it's 'Google vs. Death'


Anna Kuperberg / Google, via TIME.com

Today, Google announced the launch of Calico, a new company that will "focus on health and well-being, in particular the challenge of aging and associated diseases."

Former Genentech CEO Arthur D. Levinson, who is Chairman of the Board at both Genentech and Apple, is CEO and a founding investor of the new Google spinoff venture.

Noted Google+ user Larry Page posts this morning:

OK … so you’re probably thinking wow! That’s a lot different from what Google does today. And you’re right. But as we explained in our first letter to shareholders, there’s tremendous potential for technology more generally to improve people’s lives. So don’t be surprised if we invest in projects that seem strange or speculative compared with our existing Internet businesses. And please remember that new investments like this are very small by comparison to our core business. Art and I are excited about tackling aging and illness. These issues affect us all—from the decreased mobility and mental agility that comes with age, to life-threatening diseases that exact a terrible physical and emotional toll on individuals and families. And while this is clearly a longer-term bet, we believe we can make good progress within reasonable timescales with the right goals and the right people.
Hey, none of this health and wellness stuff should come as a surprise to internet old-timers who recall when the "web crawler" was named "BackRub."

Time has an exclusive, in this week's cover story at the magazine. The short version: "the company behind YouTube and Google+ is gearing up to seriously attempt to extend human lifespan."

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Cancer quack continues killing women, new link to odd hospital revealed

Skepticblogger Orac writes about the sad saga of Fabio Lanzoni’s sister Christina’s ovarian cancer, which killed her, but with help from "University General Hospital and at the Burzynski Clinic." It's no accident that this hospital, which has been sued for fraud and is associated with America's famous non-jailed cancer quack, goes by the abbreviation "UGH."

Kentucky man shoots wife with late-stage breast cancer, reportedly at her request "to end her suffering"

"I shot her," Ernest Chris Chumbley, 48, told a local television news program from jail in Laurel County, KY Wednesday. He was speaking about his wife, who had late-stage metastatic breast cancer. "She died from my shots, but it's not murder."

More at USA Today. From the local TV news report, which is heartbreaking, and indicates Mrs. Chumbley's husband was carrying out "her last wish"--

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After injecting poop bacteria into brain cancer patients' brains, doctors forced to resign


Enterobacter aerogenes. [via microbewiki]

Two neurosurgeons at UC Davis have resigned after infecting brain cancer patients with a pathogenic bacteria from their bowels in a last-ditch effort to halt progression of their cancers. The three patients gave their consent to Dr. J. Paul Muizelaar, 66, the former head of the neurosurgery department, and his colleague, Dr. Rudolph J. Schrot. But the doctors hadn't received OKs from the FDA, or school authorities, and the procedure hadn't even been tested on animals.

As Maggie wrote here last week, it's a complicated story that strikes at the heart of medical experimentation ethics, and how difficult treatment options are for patients with aggressive cancers.

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