Jody Schoger: Livestrong, Armstrong, and why "finding the cure" isn't all that matters for people with cancer

The recent news about Lance Armstrong and the USADA sparked much discussion online about Livestrong, the cancer organization founded by the cancer survivor and cycling champion. As regular Boing Boing readers know, I have cancer. A confession: I wasn't particularly interested in Armstrong or Livestrong before my diagnosis, but have since connected (primarily through Twitter) with a number of people with cancer who are part of the organization, or who have benefitted from its support services.

So, when I read opinion pieces last week criticizing both the man and the organization, I was annoyed to see pundits who do not have cancer slamming Livestrong for not spending money on "finding a cure," and alleging that the organization falsely claimed it was doing just that. Research for "the cure" matters, but it's not all that matters to those of us who may or may not live to see "the cure." I didn't get this before. Now I do. And I'm not just talking about "awareness," a term I loathe. It's this: Navigating the nightmare of treatment, medical bills, and the wreckage cancer makes of relationships and our professional lives—this is the stuff that actually matters more to us, in day-to-day terms. Fighting the disease on behalf of future victims is important. But so is helping the people who have the disease, right now.

Jody Schoger (blog) is a writer, cancer survivor, and advocate for people with cancer. I met her through Twitter, and she has become an important part of my personal cancer support circle.

Jody and I were trading emails about a recent Bob Lefsetz rant. That piece referenced an Outside Magazine article by Bill Gifford. Jody is a longtime supporter of Livestrong (her Twitter avatar reflects this!), so I invited her to share her views on the matter here on Boing Boing.

Jody writes:

It’s easy to take pot shots at cancer organizations when you’ve never worn the shoes of a cancer patient or walked alongside one.

It’s easy to criticize when you’ve never had chemo pumping into a vein in your chest or rushed a parent on oxygen into an emergency room for breakthrough pain.

Cancer survivors can read between the lines and read well they do. They know what counts and what to discount. There’s something about anthracylate-based chemotherapy that somehow amps up your internal bullshit detector.

Mine went off like clockwork yesterday when a friend shared an email attacking Lance Armstrong and the organization he founded, Livestrong. In cancer advocacy you can rarely, if ever, change anyone’s mind when an opinion is well entrenched. You can only grow the support of others who share your vision. This person believes what he does about Lance. That is that. But when the snarly-snark verbage extends to Livestrong, and cynicism starts to mar the foundation’s work, I start writing.

I want to be clear about Livestrong. The organization was never about cancer research, even though it did fund some testicular cancer projects when it was first established. Research into specific cancer treatments (potential cures) has never been its thrust. That has always, always been clear to me as a cancer survivor. No one at Livestrong, or anything in their material, ever suggested otherwise. Livestrong works to support those diagnosed with cancer and those who love them. This is a huge distinction.

Livestrong’s work is about survivorship, the science of survivorship (yes, there is one) and everything related to the topic. If reporters and prestigious news organizations, from Scott Pelley of “60 Minutes” to the NYTimes, have chosen to use the phrase “cancer research” to describe Livestrong’s work then their paraphrasing is truly incorrect.

This happens in journalism. Sentences are cut. You must be brief. Sometimes accuracy suffers.

What is essential to understand about Livestrong is some understanding of cancer and the role of nonprofits. Livestrong was the first organization to transform the word “survivorship” into an essential component of cancer care. Even though the word itself was was defined by the National Coalition on Cancer Survivorship in l986 it was Livestrong that brought the concept to life. Through the celebrity of Lance Armstrong, Livestrong itself, and the uncanny ability of its staff to understand the global reach of social media, an entirely new group of people “affected by cancer” have not only been helped by the organization but even have been transformed by the process. Livestrong understood community long before community was cool.

All anyone needs to do for a handle on the organization, and who it helps, is log on Twitter and search @livestrong #livestrong or @livestrongCEO.

I was not directly “helped” by Livestrong services, but there are something like 2.5 million who have been directly served, either through their call-in information line, survivorship planning tools, alliance of young adult cancer organizations, and now, and an on-site patient navigation service (walk-in, for underserved and those without insurance), information classes and webinars. Like many reputable cancer nonprofits, Livestrong frequently partners with other groups to bring essential news from the cancer arena directly to its stakeholders, from oncologists to survivors. You’ll see the organization at all important conferences ranging from reaching the medically underserved to NCI’s biannual survivorship research conference. If it’s about survivorship Livestrong will be there.

I encourage anyone traveling through Austin to stop at Livestrong headquarters to see what congruence actually looks like in real life. Nonprofit work is not well compensated and it’s frequently thankless, though it’s tough to find a place where the employees are as committed to mission as they are at Livestrong. There, hope, not cynicism, rules the day. The desire to empower another along the cancer continuum has always been at the heart of their mission, and that most human wish, making it better for someone else, guides them to this day. In a material world of bottom lines and dollar signs that matters. Big time.

Jody Schoger is a freelance writer and co-founder of #BCSM, the breast cancer social media chat which takes place Mondays at 6pm Pacific time on Twitter. People with breast cancer, and their caregivers and loved ones, can participate by following the #bcsm hashtag. Jody blogs at and is a 14-year breast cancer survivor.


  1. Livestrong does what Candlelighters could not.  Candle lighters is about children specifically, and the sorrowful-sweet, almost religious sense of hope-against-hope that cancer kids don’t die.  Yes, it has its place and it was all there was in 1977. 

    Livestrong does something else entirely.  It is less like a quiet chapel where you can go to cry it out, and more like, “Let’s ride off into the sunset with our swords drawn!  We might come back!  But if we don’t, FUKKKK CANCER!!!  Yarrrrrh!!!”  Different. 

    I like Livestrong better.  More active and passionate.  But don’t take this as me knocking Candlelighters or any other cancer foundation.  Get the support you need, but go to what speaks to you the strongest.

  2. The point of the Lefsetz piece wasn’t that research is the only worthy goal. The point was that Livestrong likes to portray itself as a major funder of research without actually doing it. And that is an issue.

    1. I traded emails with Bob about the piece. I know and respect him. But Livestrong doesn’t “like to portray itself” as funding research. That’s just not accurate. They are portrayed that way, yes, but that’s the point of this blog post, bub.

      1. Maybe my wording isn’t perfect, but the Outside magazine piece (which no doubt you’ve seen) was enough to ensure that I’ll never make a livestrong donation.

        1. That’s just fine. This blog post isn’t about encouraging you to donate to Livestrong. It’s about one specific point that matters a lot to people with cancer: we need more than just “the cure,” and it’s bone-headed to criticize Livestrong for not funding “the cure.” They provide other valuable services to people like us.

          FWIW, I have never worn a yellow wristband, nor have I ever donated a dime to Livestrong. Not being passive-aggresive, just making it clear that this post is not some sort of stealth fundraising drive or PR campaign by a Livestrong activist or whatever.

          I did, of course, read the Outside mag piece in entirety. I also spoke to people who work with the organization, and have benefitted from its services. To me, their views matter a lot.

    2. LiveSTRONG never portrayed itself as a research foundation.  That has been a major myth for a very long time. Their thrust has been the forgotten area of Cancer, support and education for those currently fighting, and lobbying for legistlation to support cancer patients and cancer research.

    3. I don’t think that’s true. I don’t know anyone who misunderstood Livestrong’s mission, which is support for cancer patients, not research to find a cure, and they certainly do not portray themselves as funders of cure research. For most cancer patients, it’s not an issue.

  3. Good article. As a cancer-survivor (testicular tumor, lymph-node dissection, successful result…31 years ago), I applaud everyone who goes public with their disease. I tell people: if you notice something you think might be wrong, GO. SEE. YOUR. DOCTOR. NOW.

    I was lucky. If I’d waited six months, hoping it would “go away”, I wouldn’t be typing this.

    And yes, intensive care is no fun-fair. I spent three days mentally worshipping the image of a glass of orange soda with peeled orange wedges and ice cubes. Eating ice-chips with a spoon, zorched on painkillers, thinking “when I get outta here I’m making the Orange-Orange!”

    Never had one before. And, you guessed it, once I left the hospital I never created one. But that thought kept me going for three days.

    Massive props to Xeni and Jody. Cancer’s a beast–you gotta laugh as you kick it in the teeth.

  4. Xeni and Jody…. I love you both.  There isn’t a better person out there to explain the differences between support organizations and research organizations than Jody.  She understands both sides and I’ve learned a tremendous amount from her over the past year.

  5. Thank you all for your comments and support! Survivorship and its challenges aren’t well understood by the general population.  Every  year researchers learn more about the long-term conssequences of treatment for men and women in the 20’s, 30’s and 40’s.  Livestrong is a leader in this field. That IS the point. As a survivor, I am not afriad nor do I hold back from criticizing where I believe criticism is due. As a woman who HAS survived, who HAS knuckled through the tough stuff, I owe it to each and every cancer survivor to call it as I see it. 

  6. I think Livestrong does good things, and should be looked at separately from Lance the person who doped to win the Tour de France just like everyone else during his time as a competitor.  What I don’t like is Lance wrapping himself in the Livestrong flag and suggesting that if you’re attacking him for being a doping cheat, you are somehow attacked a cancer support group and you should leave both alone.  Livestrong remains a good organization even if its founder and figurehead is disgraced by his own actions. If Lance really cares about keeping Livestrong going, he should ask publicly that we not judge the organization according to public perception of him.

  7. It is possible to support what Livestrong does without personally supporting Armstrong, who may very well have doped (although I’m still finding the charges against him to be based on a combination of shaky circumstantial evidence and testimony from people who have pretty impure motives of their own for coming forward very late in the game). I’ve recently become acquainted with a group of cancer survivors who have a team for various cycling events, and they feel much the same way. 

    And I’d just like to express my disgust at Outside, a magazine that I’d formerly admired quite a lot, for jumping on the anti-Armstrong bandwagon after pumping up his legend when he was still a professional cyclist. I suspect that, like Bicycling magazine, their sales and page hits never went as high as when they could put that narrow, weatherbeaten face on the front, and they’re trying to get a few more bucks out of him while they still can. Their moral stance on this or any other issue is based solidly on what’s best for their own bottom line. 

  8. I think what Livestrong does is fantastic as well. I’ve been involved with some survivorship research which you can read about here:
    My life was profoundly changed by meeting cancer survivors while I was doing this research, several of them were involved with or had been affected by Livestrong. I do not have the first person perspective of having cancer, but I have lost relatives and seen what these diseases can do.

    The other part of my perspective is that I am a long time amateur cyclist. I started racing in the late 80’s and become very serious in the early 90’s – just when Lance was coming up. Even back then everyone talked about him in racing circles. I still ride a lot and race occasionally. So I have some limited understanding of what it takes to get to Lance’s level (while never coming even remotely close myself). Most serious cyclists I know are not at all surprised by doping. If you’ve tried to race at that level you understand that the human body just can’t cope. People often bring up Lance’s unique physiology and abilities – and while it’s true he is an unusually gifted athlete – you have to remember that every professional cyclist who makes his team’s Tour roster is at least within a few percentage points of this level himself. The Tour represents the best of the best. The contenders for the overall each had abilities equal to if not better than Lance. We know now that all of the overall contenders Lance not only beat but destroyed were doping. This was during a time when average speeds during the Tour were unheard of historically – and it turned out that everyone was on drugs. It may be easier for cyclists to accept that Lance doped than for the cancer community – but people need to face reality.

    Livestrong would not be what it is today if Lance had not been so dominant in the Tour. How do we separate the important work that the foundation does from the dubious past of its founder? Perhaps just as Lance must do himself – compartmentalize. The nearly psychotic Lance that raced and crushed everyone at those Tours is quite a different person from the affable, generous and inspiring guy the cancer community knows.

    In my opinion, for the sport of cycling and more importantly for the cancer community Lance needs to come clean.

  9. I spent the better part of 6 years supporting Livestrong (then the Lance Armstrong Foundation) as a member of the Peloton Project (raising money) and a Regional Coordinator, all volunteer work.  I had family members with cancer, two of whom died from it.  I was in a meeting room when a paid staffer of the LAF brought in a box of yellow wristbands and asked the dozen of us in the room what we thought.  Seems that Nike had donated 500,000 of them and the consensus at the LAF was that there would be 490,000 left over.  Shows you what we knew then.  I dropped off in 2005 due to needing to spend more time on my business, but still maintained a connection with the organization.  Then in 2006, the doc said those words you should only hear in bad dreams: “Yes, yes you have cancer.” Not me!  Yep, it was so. 

    My first contact was to Doug Ullman, CEO of Livestrong.  An almost immediate repsonse regarding doctor referrals, genetic testing, and a host of other items.  Surgery, removal of the miscreant organ, and I am a 6 year survivor. 

    I went to DC to lobby for the foundation, have made multiple connections with Doug to receive medical referrals to friends and family with cancer, and have handed out dozens of survivor notebooks and bracelets.  I couldn’t care less if Lance used PEDs.  I know what he did for me, for my family and for my friends.  I told him that I contracted cancer because of hanging around all those cancer survivors.  He didn’t believe me, but we had a chuckle over it.

    I have multiple, personalized autographed LA posters and pictures in my house, my office and a local bike shop.  They inspire me daily in my work and in my personal life.  I know who won those Tours. That’s something that the USADA and Travis Tygart can never take away. 

  10. Another cancer survivor here.  TCC in my bladder, three year survivor. And I can tell you that what we need is WAY MORE than just a cure. Cancer leaves you with all kinds of stuff to figure out at a time when you feel like you just can’t think. I’m single and my parents are dead. My siblings live in other cities. The only person figuring these things out is me. Support is what I needed.

  11. While preventing and curing cancer drive most of the research, if we can make cancer treatment and living with the after-effects of cancer treatment less harrowing, then there’s less pressure on curing cancer ASAP. The curative research approach is based on how awful some untreated cancers can be… and current treatment regimens rely on our fear of cancer as being worse than our fear of treatment.

    I would know, being in my 7th year of treat/watch/wait/treat for multiple genetically-caused endocrine cancers.

    Preventing cancer is, of course, the most effective cure of all (wear your sunblock, don’t smoke tobacco, clean up the environment…). But due to random gene mutations, there will always be some unpreventable cancers.

  12. Just to draw some connections here: Lance Armstrong is to Livestrong, as  Julian Assange is to Wikileaks. I support open information and supporting cancer patients and families. I don’t like blood doping to win sporting events, and I don’t like being a jerk to women (or running from false accusations).
    It seems that society is lacking the ability to grasp that individuals can do both terrible and amazing things in the same lifetime. We as individuals know this because we’ve all done it, but us as a group can’t seem to handle it.

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