Tuesday, September 14, 2010

Because of Lance Armstrong, and the foundation he started...

(The following is a joint effort with LiveStrong leader Erik Pearson of Denver, Colorado.  You can find him on Twitter @garageww).  Illustration right: photo by Chris Brewer.

In “A Champion Against Cancer, Now Under Siege,” (New York Times, August 21), Bruce Weber and Julie Macur paint perhaps the most realistic picture to-date of the storm currently surrounding Lance Armstrong.

What is minimized in this article – and completely lost in others – is the incredible impact Livestrong has had on the lives of those touched by cancer; the global visibility Livestrong has helped bring to cancer; and the potential damage the current cycling doping investigation may inflict on the foundation.

Mr. Armstrong’s story as a cyclist and testicular cancer survivor is well-known.  Most people are aware of the Lance Armstrong Foundation, the cancer fighting organization he founded in l997 following his diagnosis in October, 1996, through the simple yellow wristbands that were unleashed on the eve of the 2004 Tour de France.  Since then, more than 70 million of the $1 yellow bands have been distributed.

As recently as August 4, Mr. Armstrong himself said that he and Livestrong are synonymous.  The step to associate the ubiquitous yellow band to doping, though, is a dangerous one.  Dangerous, because linking Livestrong to the allegations could irreparably harm thirteen years of the most progressive cancer advocacy yet seen in this country.  No one organization has done more to mobilize, engage and motivate individuals affected by cancer than Livestrong.

Early on, Livestrong was one of the first organizations to equate the term “survivor” with empowerment, and many Livestrong staffers are themselves cancer survivors.  Livestrong made it OK to talk openly about cancer.  It gave survivors a place to talk about every kind of cancer and all of its emotional, sexual and spiritual side effects.  What can’t be emphasized enough is its establishment of a survivor culture, a legacy of grassroots cancer-fighting organizations and contributions to the body of knowledge about cancer in two significant areas:  cancer in young adults and cancer from the global perspective.

Perhaps Livestrong’s greatest contribution has been to move the topic of young adult cancer into the public eye.  Young adults from ages 15 through 40 are caught between the worlds of pediatric and adult oncology, and face many long-terms effects from cancer treatment, often at the beginnings of their professional or married lives.  This is the age group most likely to ignore symptoms of, and preventative measures for, cancer.

Livestrong CEO Doug Ulman, already a three-time cancer survivor at 33, was in college when he was diagnosed with cancer for the first time.  He spearheaded the formation of the Livestrong Young Adult Alliance, a coalition of some 170 different organizations around the world that promotes research and advocacy geared towards young adults.  In contrast to all other age groups, survival rates for young adults have not increased since 1975, a key area of concern.

In 2009, Livestrong hosted the Global Cancer Summit in Dublin, Ireland.  On the heels of that summit Livestrong issued “Cancer Stigma and Silence Around the World,” a report calling much-need attention to the stigma cancer carries in developing nations such as Mexico, India and South Africa, and the barriers that stigma presents to treatment in those countries.  Most recently Livestrong co-authored “The Global Economic Cost of Cancer.”  This report was released jointly with the American Cancer Society at the World Cancer Congress in Shenzhen, China, where Mr. Ulman was appointed to a two-year term on the board of directors of the Union for International Cancer Control (UICC).

Among other things, they put on four yearly iterations of the Livestrong Challenge, the Foundation’s signature fundraising event that attracts tens of thousands of participants. The event’s corporate sponsors donated all the operating funds needed to host the event, which means 100% of the money raised will come back to support Livestrong’s mission.

Volumes can be written on how Livestrong helps people every day through its SurvivorCare line, which served more than 9,000 people in 2009.  On Twitter, Sarah Hobbs wrote: “Nine days after losing health coverage I’m told I need a work up to rule out breast cancer.  Thanking God for the Lance Armstrong Foundation that is helping me get the mammogram and ultrasound done.”

Former Nine Inch Nails frontman Trent Reznor tweeted, “Recently lost a hugely important person in my life to cancer.  Livestrong was an invaluable resource throughout the fight.”

These and so many others are the stories that don’t make headlines.  The Livestrong team is quite tech savvy in its outreach, utilizing Twitter, Facebook, and two iPhone apps to reach an increasingly connected cancer community. The Livestrong.org website has brought together a world of people where support and proper information can be found, and through it, Livestrong has created momentum toward fighting cancer where such energy had not previously existed.

Triggered by allegations from Mr. Armstrong’s former teammate and disgraced 2006 Tour de France winner Floyd Landis, and headed by FDA investigator Jeff Novitzky, the inquiry could cause irreparable damage to Livestrong’s mission and outreach.  Who is the winner if this happens?

Ordinary citizens should question the necessity to spend millions of dollars on a sports-related probe during the country’s worse economic downturn since the Great Depression.  Even now, with the nation’s egg supply undergoing massive recalls due to a widespread salmonella outbreak, it seems the FDA is more concerned with tasking its chief investigator to probe cycling chains than to protect the food chain.

Yellow is a color of courage and optimism, for one day finding our way through, past and beyond cancer.  There are 28 million people around the world living with cancer, who could care less about a decade old doping mystery Mr. Novitzky is fixated on solving.  Because of Lance Armstrong, and the team of incredible people who run Livestrong, anyone diagnosed with cancer today can find support, assistance and information immediately, for all types of cancers.  Ask any cancer survivor who Lance Armstrong is and be prepared to sit down and listen, because you will hear his or her story.  That’s what counts.

Besides, quipped one young adult survivor on Twitter, “the yellow wristband is the only thing you can wear in a CT scan.”

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About the Authors:
Erik Pearson is a cancer co-survivor and a Denver-based global volunteer leader with Livestrong.  His father died from lung cancer in 2009 after a three-year fight.

Jody Schoger is a 12-year breast cancer survivor and a Livestrong global volunteer leader, blogger and cyclist. She and her husband, a two-time melanoma survivor, live in The Woodlands, TX. She writes  at http:/womenwcancer.blogspot.com

12 comments:

Jody said...

Additional thoughts:

As you can imagine, this article went through many drafts and upheavals before I hit "publish" today.

Yet a message from a friend leads me to say what may not be apparent.

As a cancer survivor my gratitude and debt to Lance Armstrong is enormous. He is the force, the energy and impetus to making LiveStrong happen.

The important thing for all of us to me -- is that we stay united in fighting cancer.

I'm looking forward to hearing from you.

How do YOU LiveStrong?

beyondbreastcancer said...

Wow! A powerful thought-provoking post for sure. Many thoughts rushing through my head as I read this so forgive me if I ramble on too much!

I attended the LiveSTRONG global summit in Dublin last year and as I listened to Lance Armstrong speak of the “the obligation of the cured” – the idea that those who survive cancer should help others do the same, I felt goosebumps. Here was someone putting into words what has been motivating me for the past 5 years since my own cancer diagnosis.

The summit in Dublin was an awe-inspiring occassion - I have never been to anything quite like it - the atmosphere was electric and this was in no small part due to the charismatic presence of Lance himself. I have no doubt having witnessed it myself that the words of American Cancer Society CEO Dr. John Seffrin who said that it was Armstrong's "star power," which made a success of the global inititiave. "I refer to [Armstrong] as the personification of the hopeful side of cancer," Seffrin said "What he's doing is much bigger than most people realize."

Having said that I am well aware of the controversary surrounding the man and that for as much as he is revered and admired in many quarters, he is equally resented and villified in others.

But there is no denying the "Lance effect" is a powerful motivation for many who look to him for inspiration.

The task that now lies ahead for LAF is to keep its message from being drowned out in the ongoing Armstrong controversary. Doug Ullman is confident that it can and I am inclined to believe him when he stated that The Livestrong brand and the organization, as intimately as they are tied to Lance, have a life of their own"

LiveStrong everyone!

Jody said...

And to you, too, Marie!

We both shared those goosebumps on the phrase " the obligation of the cured." You take your obligation seriously as do I.

That's why Erik and I put this piece together.

And I love the quote you included:
"I refer to [Armstrong] as the personification of the hopeful side of cancer," Seffrin said "What he's doing is much bigger than most people realize."

Thank you so much for your thoughts,

Love,
Jody

chari olmedo said...

Dear Jody and Erik,
I've been saying all along I find Livestrong and Lance Armstrong the sportsman ,the cyclist, two separate entities. I have to. It's the only sensible thing to do but not now that he seems to be in the eye of the hurricane... I always saw it that way.
That Livestrong will have to suffer horrific consequences if the allegations are proven right is, unfortunately, a byproduct of the 'santificaton' so many people insisted on making of the man: a temperamental, competition driven man... a man as flawed as you or me.
By claiming that Livestrong and himself are the same thing, Lance is not doing his wonderful non-profit any favours.
The British cyclist David Millar comes to my mind whenever Lance says, time and again, he is probably the most tested athlete in the planet and he has never failed a test. Neither did Millar... yet he got busted.
I'm hoping for Livestrong's sake Lance isn't lying or, if he is, I hope he doesn't get caught.
It would be the biggest catastrophy imaginable for the non-profit and terribly costly to the fight against cancer.
I wear my yellow band with pride and I will continue to do so regardless of the outcome for Lance's cycling career.
Love to you both

Annemieke said...

Dear Jody and Erik,

What an amazing blog, outlining so well what an amazing job LIVESTRONG/ Lance Armstrong Foundation does. The reason I add the Lance Armstrong Foundation is that in all of it I miss the Lance Arnmstrong aspect. I understand the article is mend to show LIVESTRONG is more than Lance and that is right. But that is the way I would like to put it. LIVESTRONG is more than Lance Armstrong, not bigger than. As the people at the LAF often point out, LiveSTRONG is all of us. But I was very happy to see the addition that Jody made about Lance and his essential role in LIVESTRONG and the comment that Marie made in which she stated it was Lance’s his charismatic personality that made a very big impression on her and his statement about the obligation of the cured hit home. And how the "Lance effect" is a powerful motivation for many who look to him for inspiration. This is what I tried ot explain in my own blog: how his example kept me on my feet and got me back on the bike.
The addition of the quote by Dr. John Seffrin who said that it was Armstrong's "star power," which made a success of the global initiative. "I refer to [Armstrong] as the personification of the hopeful side of cancer," Seffrin said "What he's doing is much bigger than most people realize."

If I were Lance I would feel a bit left alone or hung out to dry if I created an amazing movement, worked my a... off to raise funds and awareness and than by a sign of trouble people try to put distance between me (Lance) and my lives work. By stating LIVESTRONG is bigger than Armstrong you might lead people to think you believe the guy is a cheat but hey, his Foundation is great. I would have love to have seen a bit of "we got your back as you got ours" as well.

Please believe me if I say I get your point and you have outlined the beautiful work the Foundation does and I do think the most important thing here is we keep fighting the good fight, but these are my reservations. Still a huge LIVESTRONG believer and fighter, will always be a LIVESTRONG Leader.

Thanks for your great work, Annemieke

Jody said...

Chari,

Altho I disagree with some of your thoughts about Lance -- what he has done for cancer is extraordinary. I don't sanctify him. Anyone who has seen competitive athletes at any level know how driven they are. That same drive is what made Livestrong, and that'w why I wrote this with Erik.

There's also another story I didn't have time no space to include. I heard this at a planning committee I'm on from a nurse. She is a soft-spoken and thoughtful woman who was at MD Anderson when Lance happened to be there for a visit. He didn't do the obvious: which was to go in through a pack of reporters and photographers. He took the back stairs so he could get up on the floor and visit with some pediatric patients.

Truly appreciate your thoughts. Theirs a wide range on this issue and I'm glad you wrote, and I'm glad to be standing up to cancer with you.

Love,
Jody

Jody said...

Annemiekeh

I think your points are great. We've talked about how we both read "It's Not About the Bike" at critical points in our lives.

And I've also seen Lance quoted as saying that fighting cancer is the coolest thing he's ever done. I don't think in any way we left his efforts out to dry; the intent was to let some of that extraordinary legacy stand on its own.

But as always, you know how much I value your perspective, loyalty,, and feedback. To have you as a friend -- or a fan -- is an awesome, awesome thing,

Love,
Jody

Annemieke said...

Dear Jody,

I know we agree on many things, including this and I also know your take on the subject in this blog. I´m happy to see your blog reads because of Lance Armstrong and the Foundation he started :-)

And I do feel that this legacy has a merit on its own and its good to stress that, just wanted to express my feelings about forgetting the impact of the man leaving this legacy. Not thinking he's a saint just think that the ordeal he and all of you went through taught him to fight and that is why he's an amazing athlete on top of an amazing cancer advocate. As always happy and proud to be calling you my friend. You inspire me every day again. Love, Annemieke

chari olmedo said...

Dear Jody,
What Lance has done for the cancer community is not up for debate. No one would ever dare deny his endeavour.
My point was that, as human, he can be the most dedicated person in the fight against cancer and yet have cheated in his professional career. I'm not saying he has and I'd rather think he hasn't.
He is a great orator (I was at the summit) and his cancer story has inspired me more than some people would know. In fact, I only started to volunteer within the cancer community because I started following him on Twitter before the Tour last year.
I thought I'd just follow a famous cyclist... and I ended up with a good few dozens of Livestrong army leaders teaching me a thing or two about cancer, survivorship and friendship.
All that I can say is: May the truth prevail and may we all remain supportive of the best cause there is.
Love

BreastCancerSisterhood.com said...

Jody,
Your & Erik's post have stimulated thoughts on many levels. I, too, am heartsick at this witch hunt. We humans are a strange breed: We love to tear down that we have built, and for what? The lure of tabloid headlines, jealousy, bringing our heroes down to "our level" to ease our guilt about the sins we may or may not have committed, or perhaps it's someone's twisted way of getting their 15 minutes of fame.

What worries me is not whether Lance Armstrong is guilty of doping or not, but that this same topple the leader mentality may urge millions of Armstrong supporters to throw the baby out with the bathwater.

Lance Armstrong is more than just the bike! He survived a rare and deadly Stage IV cancer. That in itself is inspiration whether he was a public figure or not. Those of us who are cancer survivors and members of cancer families must stand with him and this life-changing movement he has created. The Armstrong Foundation is more than a movement, it is a frame of mind, empowerment, information and hope.

You and Erik have inspired me to take action! I reach a different group of readers than you do, Jody, and want to do a supportive Vlog, a video blog for an ASAP release. As you know, I'm in Boerne & can be in Austin in a heartbeat. Who would you and/or Erik suggest I approach about doing a "big picture" vlog? As a longtime journalist, I have honored every source, report accurately and have gotten 100% behind every story I've ever done.

FYI, I have 2 upcoming live San Antonio television appearances, one next week, and one in October. If desired, I would be happy to deliver the Armstrong message. Please talk to Erik & let me know about the Vlog & my appearances.

Yours in the fight,
Brenda

Jody said...

Brenda,

That's was exactly why we wrote the piece -- so those who do equate allegations about Lance with the foundation. Allegations are one topic; the work of the foundation, that he started from the first employee to the 86-person team it is now -- the other.

Let's email tomorrow first thing about how to approach this for a video release. We need to talk, anyway. I think you are on to an awesome idea.

The Novice Garage Woodworker said...

Brenda and Jody,

Let's do this!

Sisters

Sisters
Sisters