Barbara Brenner has lost her voice to ALS, but the disease hasn't silenced her.
She's the same outspoken activist she was nearly two decades ago when, as executive director of the San Francisco grassroots advocacy group Breast Cancer Action, she battled to change the conversation around breast cancer from detection and treatment to cause and prevention.
Today, the two-time breast cancer survivor has amyotrophic lateral sclerosis, a fatal neurological disease commonly known - unfortunately, Brenner says - as Lou Gehrig's disease.
"The irony is that at 41, which was how old I was when I got breast cancer, I didn't expect to live to 55," Brenner said. "I seemed to beat the breast cancer odds and end up with goddamn ALS."
But, once again, Brenner, 60, has found purpose in illness.
"As an activist, I think my job in ALS, as it was in breast cancer, is to raise the issues and get the conversation going," said Brenner, communicating through NeoKate, a text-to-speech app on her iPad that Brenner calls Kate.
She created a blog - Healthy Barbs - to make her views known on everything from the slow progress in finding treatments, the scientific community's failure to focus on potential environmental causes for the disease and the continued use of Lou Gehrig as the disease's namesake.
"As the population ages, fewer and fewer people actually know who Gehrig was and the pictures of him don't indicate anything about ALS," said Brenner of the baseball legend, who died of the disease in 1941 at the age of 37. "Someone told me that when he was diagnosed, the information about the natural course of the disease was kept from him.
"I'm guessing that, had he known that, he would not have considered himself the luckiest man in the world," referring to a line in Gehrig's 1939 farewell speech.
She hopes to write a book from her collection of postings and keeps friends, family and followers updated online through Twitter, Facebook and patient site CaringBridge.
A new direction
Brenner, a graduate of UC Berkeley's Boalt Hall School of Law and a former member of the board of the American Civil Liberties Union, was in private practice when she was diagnosed with breast cancer for the first time in 1993 and underwent a lumpectomy, chemotherapy and radiation.
In a letter to the editor of The Chronicle later that year, she argued that breast cancer should be the focus of increased research. "There is every reason that such research should target breast cancer, a disease that, because it overwhelmingly affects women, has long been an orphan in the scientific community," she wrote.
The letter drew the attention of the fledgling Breast Cancer Action and, in 1994, she joined its board, leaving her law practice to devote herself to full-time activism. A year later, she became the organization's executive director and the following year, 1996, she underwent a mastectomy after the disease recurred.
Brenner said she was "well aware that, having breast cancer so young, my time on Earth might be limited."
"I decided I wanted to do something that would have an impact on women's health," she said.
Under Brenner's leadership, Breast Cancer Action coined "pinkwashing" - a term that applies to slapping a pink ribbon on products to generate revenue that may not be used for breast cancer research and that may even harm women's health.
The group launched its "Think Before You Pink" campaign in 2002 and made Susan G. Komen For the Cure a target. Breast Cancer Action has criticized the world's largest breast cancer organization for such marketing decisions as partnering with KFC to sell pink buckets of fried chicken, which most people agree is not healthy, and for commissioning a charity perfume that contained potentially harmful chemicals.
Brenner is featured in "Pink Ribbons, Inc.," a newly released documentary by a Canadian film company that is highly critical of Komen. The film, released just weeks after Komen became embroiled last month in a national controversy for ending its long-standing funding of Planned Parenthood, will make its San Francisco debut March 29 as part of the Human Rights Watch Film Festival. Under pressure, Komen subsequently backtracked.
Brenner considers the film to be part of her legacy. In the film, she and other activists criticize how the pink ribbon campaign is marketing products, not championing for a cure.
"I think that if people actually knew what was happening, they would be really pissed off. They should be," Brenner says in the film, speaking with the slightly hoarse and halting voice she had in September 2010 when the documentary was filmed.
Brenner stepped down as executive director of Breast Cancer Action at the end of 2010. She had been thinking of retiring, but her ALS diagnosis accelerated the decision and completely changed how she envisioned spending her retirement years with her partner of 37 years, Suzanne Lampert.
Her former colleagues at Breast Cancer Action credit Brenner with imprinting her vision and spirit on the organization and at the same time leaving it strong enough to continue without her.
They described her as someone incapable of being disingenuous, who is quick to become enraged about an injustice but who is equally quick to show sensitivity and caring.
"Barbara is an activist with a capital A. It's not what she does, it's who she is," said Joyce Bichler, deputy director of Breast Cancer Action.
Brenner, the third of seven siblings, was raised by liberal Jewish parents in Baltimore and started questioning the status quo as soon as she could talk. Her mother took her to her first civil rights march when she was about 10.
Her activism continued at Smith College, a private women's school in Massachusetts, where she said she became heavily involved in the anti-Vietnam War movement. In graduate school at Princeton, she met Lampert.
When Lampert moved to Southern California, Brenner quit Princeton, packed up and went with her, and eventually the couple ended up in San Francisco. Brenner graduated from law school at UC Berkeley and went into public policy law.
"Policy is in my background, and activism is ultimately about changing policy," she said.
In spring 2010, Brenner started having slurred speech and a battery of tests followed. The idea that she might have ALS was not a far-fetched fear; her older sister had died of the disease.
"There is no definitive test for ALS, so they test for everything else that might explain the symptoms, and if those tests are all negative, ALS is the winner," she said.
Brenner is participating in a clinical trial for a drug that could potentially treat the disease, but does not know if she's taking the real drug or a placebo.
The trial is testing a drug designed to work on the mitochondria, the power producers of human cells. The mitochondria play a critical role in the development of ALS, said Brenner's doctor, Jonathan Katz, neuromuscular research director at the Forbes Norris MDA/ALS Research and Treatment Center at San Francisco's California Pacific Medical Center.
Impatient for results
Katz said the research is promising but is not coming fast enough for patients like Brenner.
"We like to stay hopeful that something will be around the corner," he said. "But it does feel a little helpless. There's nothing more in the world you want to say than 'I have a treatment that will make this stop or go away.' "
Brenner is frustrated that the small advances in ALS treatment have not translated into tangible help for patients. She wants scientists to focus on potential environmental causes or triggers for the disease. Because of her sister, she said, everyone assumes her disease is inherited.
"My sister and I grew up in the same environment," she said. "She was three years older than I, but the medical community believes if there are two siblings in the same family with ALS, it has to be an inherited genetic problem - even though they can't identify, at least in me, what the gene is."
Brenner moves slowly and uses a walker, but she will not sit still. She maintains a busy schedule. Last month, she traveled to Massachusetts to receive a Smith College Medal given to alumnae for extraordinary professional achievements and community service. She is buying a van so she and Lampert can travel when she is in a wheelchair.
She remodeled her San Francisco home to accommodate an elevator and features to make it more accessible. She continues to play piano, as her fingers are yet unaffected by the disease, and do Pilates and yoga. She and Lampert spend time in Mendocino, a place they both love.
Brenner has also found solace through her faith, delving into aspects of Jewish spirituality at a healing center and with her rabbi. Through that she has found some comfort and acceptance in what lies ahead.
The idea that life would be fair has never been part of Brenner's philosophy.
After her first diagnosis with breast cancer, Brenner said she became "very conscious ... that tomorrow was not guaranteed and that I might not live to a ripe old age."
"That motivated me for a long time," she said, "but it faded as time passed. Now I confront that reality, and it won't be going away."
Brenner said she focuses on managing ALS, but not surrendering to it.
One of her former colleagues, Angela Wall, said Brenner subscribes to the "pain is inevitable, suffering is optional" philosophy, which was written on a sign that hung in her offices.
"Barbara isn't done yet by a long haul," she said.
What is amyotrophic lateral sclerosis? It's a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The progressive degeneration of the motor neurons destroys the ability of the brain to initiate and control muscle movement, leading to paralysis and ultimately death.
How rare is it? About 5,600 people in the United States are diagnosed with ALS each year. The incidence of ALS is 2 per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.
What causes ALS? Several research studies are investigating possible risk factors that may be associated with ALS, but more work is needed to determine what genetics and/or environment factors contribute to developing the disease.
Is there any treatment available? Currently no treatment is available that significantly slows or halts the progression of ALS, but some drugs and physical therapy can help control symptoms and make living with the disease easier. Riluzole is the only approved drug for ALS. It has shown only modest benefit in improving survival time.
Source: ALS Association.
Blog, Twitter: Keep up with Barbara Brenner at barbarabrenner.net and Twitter at twitter.com/BBzinger.
'Pink Ribbons, Inc.'
The 2012 Human Rights Watch Film Festival will present the San Francisco debut of "Pink Ribbons, Inc." 7 and 9 p.m. March 29. Yerba Buena Center for the Arts, S.F. http://ybca.org/2012-human-rights-watch-film-festival.
To find out other places where the film will be showing soon, go to: links.sfgate.com/ZLHY
Victoria Colliver is a San Francisco Chronicle staff writer. firstname.lastname@example.org
© 2012 Hearst Communications Inc.