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Leukemia & Lymphona Society: A model non-profit

Organization's research funding saved Bruce Collins' life

I’ve never written about the most important non-profit organization in my life—until now. Indeed, if it were not for the Leukemia & Lymphoma Society (LLS) I would not have a life at all. That is not an exaggeration.

I mention LLS now because this is the 10th anniversary of my leukemia diagnosis. On my birthday in 2002, I found out I had a rare and incurable blood cancer called chronic myelogenous leukemia (CML). The treatment options at the time were not good, and I was likely to live, at most, only another eight years. However, just a few months before I got the bad news, the Food & Drug Administration had approved a new drug called Gleevec, the first of the so-called molecularly targeted therapies. That means the drug kills only the cancer cells without harming healthy cells. I started taking Gleevec and was almost back to normal within weeks. I still take that big orange pill every day. The result? My oncologist says I’m more likely to die with CML than of it.

I quickly learned that the research leading to this lifesaving miracle drug was funded by LLS, a charity created in 1949 whose stated mission is to cure blood cancers and improve the quality of life of patients and their families. As a CML patient, the more I learned about LLS and its help to people like me, the more I wanted to get involved. As a lawyer who practices in the non-profit sector, I was impressed with its mission, its successes, its programs, its staff and its integrity. For one thing, in all the time I’ve been paying attention to charities, LLS has never been in the headlines for any of the offenses we’ve seen elsewhere, such as outrageous salaries, huge fundraising costs or misspent funds.

As a board member of the National Capital Area Chapter, I have a decided bias toward LLS, but I have that bias for good reasons. For example, according to the latest reports, LLS spends 78.1 percent of its revenue on programs such as drug research and direct aid to patients like me. It is complying with its formal corporate policy not to let overhead costs exceed 25 percent—a policy many charities would do well to emulate.

And the society’s research funding is making a real difference. In the 1950s, childhood leukemia, the most common, was 100 percent fatal! By the 1960s the 10-year survival rate was slightly better at less than 10 percent. Today, a child diagnosed with leukemia has better than a 90 percent chance to live a natural lifespan. The difference can be attributed directly to the LLS-funded research into new drugs and treatments. I’m living proof of that. Before Gleevec, the CML survival rate was also less than 10 percent. Now, with Gleevec and the newer and better drugs called “super-Gleevecs” that followed, the survival rate is better than 90 percent. I would be foolish and ungrateful not to be a booster of this particular charity. So I am.

My involvement with LLS has deepened my appreciation for non-profit law and many of its facets. If you sit on a charity board, you analyze issues from a different and more informed perspective. If you raise money from your friends and colleagues for a charity, as I do, you are much more attentive to where the money goes. If you work with the staff and join in with the volunteers, you think more deeply about risks to them. If you have benefited from the charity’s mission, as I have, your motivation becomes more than legal, analytical or policy-driven. It becomes personal. And so it has with me.

I’ve given my time and effort to raise funds to support more research to develop treatments like Gleevec. My current campaign is viewable at nca.lls.llsevent.org/BruceCollins. My goal is to find cures by funding research. And, to be able to stop taking that big orange pill every day.

Bruce D. Collins is corporate vice president and general counsel of C-SPAN, based in Washington, D.C. Email him at collins@c-span.org.

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Bruce D. Collins

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