State of the Foundation

by ANDY MILLER – Operationeel Directeur / Executive Vice President

What Now? – A Challenge for the LIVESTRONG Foundation, on Behalf of Survivors, for the Cancer Community – LIVESTRONG Foundation Assembly, Thursday, Feb. 28, 2013; Chicago, Illinois


I know you were expecting to hear from our CEO, Doug Ulman today. I was too. Unfortunately, things did not go as planned. Life happens, weather happens, things happen that we can’t control and our plans are upset. Cancer has taught us that. So what do we do? We adapt. We look at what needs to be done, we ask for help, and we move forward. We make new plans, sometimes better plans. Plans more focused on what is truly important. Cancer survivors have taught us that. I think I am on safe ground to say that the past year did not go as planned. We faced headwinds that were not only stiff, but heartbreaking. And whether you lived in Austin, New Jersey, or Australia, you felt it. We felt it together and collectively, we asked: “Where do we go from here?”
The great American poet, Ralph Waldo Emerson, said, “Do not go where the path may lead. Go instead where there is no path and leave a trail.” That is what we will do together, and we couldn’t be more proud to have you all on this journey with us! I’d also like to recognize the man who is helping us create that trail, our new chairman, Jeff Garvey. Thank you, Jeff, and welcome!

We are so honored you’ve all journeyed to Chicago to help us map out our trail this week. You have traveled from 20 nations and we have U.S. representation from 46 states, the District of Columbia and Puerto Rico. You have a very important role in these plans. You are the LIVESTRONG Foundation. Your stories, your time, your energy and your passion make our mission possible.

It has been a difficult year since we all last gathered together. I see no reason to avoid talking about that. But through all the noise and distractions, we – us at the Foundation and you by our side – have remained steadfast in our unwavering commitment to our shared mission. Together, we have notched many successes:

  • We turned 16 in January. We’re officially in the driver’s seat.
  • We ended 2012 with an impressive revenue number, exactly in line with our peers in the philanthropic community despite a tough economic environment;
  • We are recognized as one of the most highly-rated non-profit organizations in the U.S. by the Better Business Bureau, Charity Navigator and other industry leaders
  • We have a strong and growing lineup of cause marketing partnerships that help us reach more people, keep our financial picture strong and model innovative and creative thinking for the nonprofit world as a whole
  • And, our proudest accomplishment of all, 2012 saw a record number of people served through our free one-on-one cancer support services, surpassing the 2.5-million-peopleserved milestone

This is what matters most: the fact that the team represented by everyone in this room and many beyond it has performed at the highest level on behalf of those we serve despite what swirled around us.

But let’s do talk about the swirl. We did our work for many months, some might say for a couple of years, with unanswered questions about our Founder’s cycling career. As those questions were answered – first in October and more recently through Lance’s televised interview – some important issues were finally settled. Lance stepped away from the Foundation in October. In November, the Foundation also made a legal name-change it had long led with unofficially – the LIVESTRONG Foundation. We set about charting an independent course forward.

Still, we’ve found ourselves caught in the crossfire of the media frenzy. Back in 2010, Ken Berger, the CEO of Charity Navigator had this to say to the Chronicle of Philanthropy – “[They are] not going to be able to thrive if the person who is the spirit behind it is in trouble. It is just going to devastate them.” And the shots kept coming. Now, we don’t know these people. These “experts” don’t know anything about our work. Yet they feel entitled to publicly question our credibility, our sincerity and our mission. But we do know these people. And they know us because they don’t award these designations lightly. I also know what’s true about our work and I believe in it, wholeheartedly. And I believe you do too. Thank you for standing with us in this storm.

Our organization was born out of a young man overcoming advanced testicular cancer and his sincere desire to help fellow survivors. Even as he battled against overwhelming odds, he made the decision to declare himself a cancer survivor rather than a victim and thereby became an inspiration. His exceptional circumstances – coming out of that adversity to become one of the greatest athletes in the world and channeling his fame toward an important cause – forced the world to pay attention. We were deeply disappointed when we learned along with the rest of the world that we had been misled during and after Lance’s cycling career. We accepted the apology he made to us in order to move on and we remain grateful for what he decided to create and helped build.

Let’s not misunderstand what’s really at work here. The real reason the Foundation took root is that it touched a chord deep in all of us. It inspired us to take action! But we didn’t do it for Lance. We did it for our loved ones. Our husbands, wives, mothers, fathers, brothers and sisters. We did for our children. We did it for our friends and neighbors. We did it for ourselves. Because we believe in life! We believe living every minute of it with every ounce of our being. And that you must not let cancer take control of it! I’d now like you to hear from our team, the people who go to work to advance our mission every day, why they do what they do. I want to share WHO WE ARE.

Over the past months, I have felt most indignant when our team’s credibility has been called into question as the result of something that had NOTHING to do with them. I can tell you the passion and dedication of the people you just heard from is real. I am proud to work side-by-side with them every single day. As the world poses the questions, “Is the LIVESTRONG Foundation bigger than its founder? Will it survive?” The answer is a resounding yes.

Our success has never been based on one person – it’s based on the patients and survivors we serve every day, who approach a cancer diagnosis with hope, courage and perseverance. We listened to their needs and took action to create free cancer support services that offer access to clinical trials, fertility preservation, insurance coverage and even transportation to treatment.

The real question the world should be asking is, “How do we help those facing cancer?” But we shouldn’t stop at the ASK. We should ACT. And the world should follow your example in what it is to take meaningful action! And while it’s not easy, as certain as he was about E=mc2, Albert Einstein was also certain that “in the middle of difficulty lies opportunity.” I agree.

We know for certain that our services and our spirit of resiliency are needed now more than ever. Resiliency is the ability to not only overcome challenge and crisis, trauma and tragedy, but also to bounce back stronger, wiser and more effective than ever. We know we are at our best when we stand in a place of strength, not one of victimhood. ‘’Will the LIVESTRONG Foundation survive?’’ Yes. Absolutely, YES! Our work is too meaningful, our role too unique, the need too great to stand for any other answer.

And look, even Ken Berger is rooting for us, now. We’re glad he came around. And we welcome his support. But the real testament is hearing from the people we serve. The people you serve. People living with and through cancer are the inspiration behind our work. They have been, are and always will be our focus. I am especially moved by this one… “It took me over two years after being diagnosed with brain cancer to contact LIVESTRONG, but I have been blown away…LIVESTRONG helped me handle the place I am in now, the part people don’t understand…Thank you LIVESTRONG for helping me.” And every day, they exhibit the resilience, drive and courage that we’re seeking. This is all true because of your hard work. Please give yourselves a round of applause.

So, What now? I’ve been getting this question a lot. And I’m sure you have as well. I want to share with you our thoughts on What Now for this Foundation. But I also will talk in a moment about some other What Nows – What Now for our fight for cancer survivors. And What Now as a challenge to the cancer community at large. There are urgent problems before us on all these fronts, and people like six-time cancer survivor Brian Balmes of Atlanta; Stuart Scott of Connecticut, who is facing a recurrence; and 29-year old survivor Alyson Achorn of Boston, are counting on us to help solve them. First, What Now for our mission and the people we serve? When you get a cancer diagnosis, your entire world changes in an instant – and you ask: What Now? We are all pretty experienced in helping people face this question, and as the Foundation faces it for ourselves we find the answer by turning our attention squarely to what we’ve always done: helping people diagnosed with cancer answer that question and all the other questions that come from it as they embark on their cancer journey. Our answer is to help them fight on their terms, to help them navigate their way, and to create a world where cancer support, care and treatment are easily accessible.
In many situations like ours, organizations decide to hunker down, go about their work and hope the storm passes. This is not a terrible way to deal with a critical moment. In fact, conventional wisdom might point that way. But it is not our way. We are an organization that has preferred to follow the road less traveled; pioneers who march to our own strong, fast beat and seek to go where others have not. We will be no different now. We see this as a moment of enormous opportunity, for us to be sharper than ever – embrace the LIVESTRONG spirit more than ever – advance understanding of what we do – and expand our impact. We certainly have people’s attention. And if we stay quiet, we put our mission at risk. So we will share our story more boldly than ever over the next weeks and months. We will tell people what the LIVESTRONG Foundation’s mission is, how we’re changing the way the world fights cancer and why we’re needed. This is the path to more supporters, expanded programs and greater success for those with cancer. This is the path to a vibrant future.It’s not time to hunker down. It’s time to double down – on who we are and what we do.
Much has been written about the evolution of organizations and the public’s fascination with ours has never been greater. It’s common knowledge – organizations must evolve in order to survive. And part of our evolution has included many logos over the course of our history. And now, today, we have a new one. The change is subtle, but it is substantive. The positioning of the bars suggests forward and dynamic movement. With the boldly visualized addition of the word “Foundation,” we have taken important steps to:

  • Expand our visual brand to show that the LIVESTRONG ethos – the belief in survivorship – is not abstract. Thousands of people and many critical programs are the “Foundation” beneath that ethos.
  • Provide our partners with an unmistakable way of communicating to their supporters and to the people who buy LIVESTRONG-branded gear or support LIVESTRONG products that those actions stand for fighting for people facing cancer.
  • We believe that while changing our mark is a small act, it’s a natural step in our evolution and a step towards becoming more us, more clear and doing more work.

I’m excited to say there’s more to come. Please save the date for LIVESTRONG Day 2013, which will take place on Friday, May 17. This is the actual day, 9 years ago, that the LIVESTRONG brand was born with the launch of the wristband. This will be another step forward for our global movement.

As for What Now for meeting the needs of cancer survivors, we cannot and will not rest. We will be aggressive as we look for new ways to fill gaps based on what we hear from survivors, expanding and adapting our programs to meet their needs. Our goals for expanding our direct services to support those with cancer include testing the Foundation’s navigation services through various expansion models in 2013. And over the next several years, we hope our direct services will be accessed by more than 15,500 cancer survivors a year and that 1.5 million people will use our self navigation tools each and every year.
Here at the LIVESTRONG Foundation, we also place a priority on multiplying the voices of those we serve to inform and impact policy. So we plan to be deeply engaged in the conversation about how the Affordable Care Act will be implemented in 2014. To serve survivors, we will advocate for patient-centered care, federal and state funding for survivorship programs, global access, advances in health information technology, and the integration of palliative care into the cancer experience. And, of course, we at the LIVESTRONG Foundation will always be listening to and communicating with survivors. It is how we have always designed our programs and services and no one in the cancer community has invested more in this on-going dialogue than we have. We have a lot of work to do. And we cannot do it alone. Fighting cancer requires collective action from all us. And we are so deeply grateful and honored by your commitment. I’d like to take a moment to recognize some of our partners who’ve demonstrated remarkable commitment to improving the lives of people affected by cancer:

  • The LIVESTRONG Foundation is a proud partner with The Creative Center at University Settlement. Since 2005, the Foundation has invested more than $1 million in the Creative Center for programs, trainings and grants to expand arts in healthcare to people affected by cancer nationwide. I’d like to recognize Robin Glazer, a cancer survivor and the dynamic executive director of the Creative Center, who is here with us today.
  • The LIVESTRONG Promotores program is a professional development program that provides community health workers with the skills and knowledge to serve and connect survivors and their loved ones to cancer-related resources and support. To date, the Foundation has trained more than 500 Promotores across the country and 16 have joined us at the Assembly. We’d like to recognize Paige Menking, our 2012 Promotora of the Year for her outstanding efforts in reaching Hispanic/Latino cancer survivors in our hometown of Austin, Texas. Thanks, Paige!
  • We are fortunate to have 161 of our 218 LIVESTRONG Leaders here with us in Chicago. One of those Leaders is Shu Milne of France. Shu raises funds to purchase iPads that she loads with the LIVESTRONG Guidebook App and system tracker, soothing music, inspiring photos and videos. She then donates them to hospitals so patients going through treatment have something useful and inspiring to use. Thank you, Shu, for your ongoing leadership!
  • Since 2010, the Foundation has invested more than half a million dollars in Camp Kesem, a summer camp for children who have a parent who has, or has had, cancer, and those funds have created 24 new college based chapters. We are fortunate to have the CEO of Camp Kesem, Jane Saccaro, with us this week. As Jane says, “no child should have to face cancer, Camp Kesem is here to ensure they never have to face it alone.”

Please know that each and every one of you – our valued partners – has our full support. This week we look forward to hearing your great ideas on how we can deepen and improve our partnerships to make them more effective in order to achieve maximum impact.

Finally, What Now for the cancer community more broadly. We believe it is on the cusp of a transformation in which holistic care that includes survivorship, navigation, treatment and research – not in succession but in concert – becomes the norm for patient care. We know that this approach leads to people living longer and happier lives. This leap forward, though not yet complete, wouldn’t have been possible without the LIVESTRONG Foundation and everyone in this room. And it will be completed with our urging and our continued advocacy. Specifically, our call to action to the cancer community is two-fold:

  • Medical professionals must shift their mindset from treating cancer in silos, where prevention, treatment, remission and palliative care are handled successively, to fully marrying medical care with support for life’s daily burdens. We must make it so that every person who is diagnosed with cancer gets, along with their medical treatment plan, a care plan for navigating their life through and beyond the disease.
  • The public also must embrace the value of survivorship so the health care system feels pressured to support and reimburse comprehensive cancer care. The sad truth is doctors now have little ability to address practical or emotional challenges because there is not enough time in the current business models and no way to get paid to deliver the care even if they want to.

In the coming months, we will call on all segments of the cancer community to work together more towards a patient-centered health care model.

Exciting and important opportunities for us to collaboratively change the cancer landscape are upon us. Together, we can write a story the likes of which no one has seen. At the LIVESTRONG Foundation, we fight to improve the lives of people affected by cancer now. We empower the cancer community to address the unmet needs of cancer survivors by encouraging collaboration, knowledge-sharing and partnership. All that we do is in service to people affected by cancer – representing their voices, experiences and needs.

  • We fight in memory of Shellie Stellrecht of Appleton, Wisconsin
  • We fight in memory of Caroline Brown of Snohomish, Washington
  • We fight in memory of John Hanly of Frankfort, Kentucky
  • We fight in memory of Brian Rose, who showed us all how to FIGHT LIKE HELL.
  • And we fight in memory of all those who ran out of time.
  • We fight for cancer survivors like Nathan and Elisa Bond of Brooklyn and their young daughter Sadie
  • We fight for our partners like Tess Kenney of Syracuse who helps survivors through LIVESTRONG at the YMCA
  • We fight for the courageous, compassionate caregivers like Frank Cedeno and Gary Partridge, who lost their wives to cancer
  • We fight for the thousands of children who turn to our partners at Camp Kesem for support after a parents cancer diagnosis
  • We fight for cancer survivors in these United States
  • We fight for those facing stigma and silence in China, Japan, Mexico and Pakistan; the United Kingdom, Uruguay, Zimbabwe and Egypt and in every corner of the globe.
  • We fight for the 28 million people around the world who are living with cancer today. Over the next three years we will remain a leader in fighting to improve the lives of people affected by cancer.
  • We will develop and advance programs, policies and systems by keeping the needs of people affected by cancer at the center of everything we do.
  • We will forge and engage communities in authentic and meaningful ways
  • We will ensure long-term programmatic, financial and operational sustainability
  • We will grow and leverage the LIVESTRONG Foundation and our brand in service to our mission

I want to ask you to take one meaningful action with me right now. Take out your phones and tablets, and take a moment to think of the one word that describes what LIVESTRONG means to you. Let’s all do this together and share it on Twitter and Facebook. [To me, LIVESTRONG means resiliencey. #FightWithUs] This is our message to the world: the LIVESTRONG Foundation is not going anywhere. We know you are not going anywhere. And all of us need to spread the word… WE ARE HERE and WE CAN HELP.

Thank you so much for your hard work and all your support. Enjoy the Assembly and LIVESTRONG