We had a chance to catch up with Kathleen Ruddy, the Executive Director of the St. Baldrick's Foundation, whose supporters have made it possible for St. Baldrick’s to fund over $100 million in childhood cancer research.
We are honored to share with you this update to our first interview in 2010. This year alone they have raised over $32 million.
Kathleen, will you please share some of the highlights of the St. Baldrick’s Foundation’s work since we interviewed you last in 2010?
We know it’s important for supporters to understand how the funds they raise or give bring us closer to our ultimate goal: to achieve cures and improve the quality of life for patients and survivors. Childhood cancer families who live each day in the cancer world, are justly eager to realize progress, but also appreciate why research progress is not achieved overnight.
We live our lives in the fast lane – we want information, answers, results now. So telling supporters a given research project will take years to complete seems a glacial pace in comparison to the rest of our lives. We all wish we had a “silver bullet” therapy to take out cancer once and for all, but it’s the childhood cancer community’s task to educate the public, media, legislators and our supporters that a collaborative, comprehensive, and sustained approach is essential for success.
With all this said, the St. Baldrick’s Foundation has been studying the impact of our grants and we’re so grateful to the team of researchers who are reviewing every grant we've made since our first in 2005. Their task has been to identify how each grant has furthered scientific knowledge, provided a basis for further research, or helped train the next generation of researchers. While this project will continue for as long as the Foundation operates, I’m pleased to share a few of the accomplishments we know of thus far:
The first successful immunotherapy for childhood cancer occurred in children with neuroblastoma
- Most kids have the high-risk form of neuroblastoma, and only 1 in 3 of these kids were cured.
- By adding this treatment, which harnesses the power of the immune system, almost half of children may be cured.
- This is the first successful new treatment approach for neuroblastoma, beyond the traditional surgery, radiation and chemotherapy.
- Neuroblastoma is a cancer of the sympathetic nervous system, a nerve network outside the brain. The average age of diagnosis is two, and it’s rare in children over 10 years old.
Cutting the relapse rate in half for the most common cancer of childhood
- This was accomplished by using an old drug (methotrexate) in a new way (high doses).
- Until now, about 80% of kids with ALL were cured. Now it’s close to 90%.
- More than 26,000 experts attended the recent annual meeting of the American Society of Clinical Oncology (ASCO). The four most important studies of hundreds presented were selected for presentation at the plenary session. Despite the rarity of cancer in childhood compared to adults, all recognized the tremendous accomplishment of this study.
- The recent dire shortage of methotrexate put the lives of thousands of kids at risk. The crisis has been temporarily averted, thanks to many St. Baldrick’s supporters and others becoming active advocates.
- “If we can induce remission in children with leukemia in four weeks, I would challenge our colleagues in Washington to enact key legislation, which has languished for the past year, within the next four weeks,” said Dr. Peter Adamson, Chair of the Children’s Oncology Group at an FDA briefing on February 21, 2012.
Accelerating discoveries in childhood cancers
- Answers to some key research questions will be available earlier now, and this is possible only because of St. Baldrick’s donations.
- For childhood cancers that are both difficult to cure and uncommon, many research institutions have not been able to devote the resources necessary to open important clinical trials.
- The St. Baldrick’s Foundation’s 2012 grant to the Children’s Oncology Group (COG) directly resulted in 130 research institutions opening four of these “high-impact studies.” This is a dramatically successful initiative.
- Children diagnosed with less common cancers or with cancer-related complications will have more opportunity to be treated on clinical trials, their best hope for a cure.
A dramatic increase in the survival rate for kids with a rare type of leukemia
- A rare and very challenging type of leukemia – Philadelphia chromosome positive ALL – had seen very little progress in research in 50 years.
- Well under 20% of these kids were cured. Now by adding a new drug, Gleevec, more than 70% may be cured.
- This research had a very rapid timeline from the stage of drug discovery to clinical trials, and rapidly advanced to become the standard of care for this type of childhood cancer.
Preparing the next generation for discovery
- Since 2005, the St. Baldrick’s Foundation has funded 61 Fellows.
- A young doctor who wants to devote his or her career to pediatric oncology research must first complete a research fellowship of three or more years after completing medical school. (These years also delay a young doctor’s ability to earn a normal salary.)
- Many of today’s experts will be retiring in the next ten years, making it crucial to replenish this pipeline of research experts who will go on to save the lives of generations to come.
- Because pediatric oncology research is not one of medicine’s most lucrative careers, and it is especially difficult for young researchers to find funding, St. Baldrick’s grants in all categories help to encourage new researchers to enter or stay in this specialty.
I’m pleased to say we’ll have a new progress report to share soon.
In your last interview, you spoke of the importance of focusing on outcomes.
True - it’s a daily focus for us.
At present, most donors use two measurements to determine if an organization is effective. The first is the organization’s cost to raise a dollar, and the second, the percentage of funds invested in the charity’s program. Consequently, we work hard to direct every possible penny to research. In fact, I’d say we’re vigilant – every employee and volunteer knows he/she is accountable to the bottom line.
However, while these are appropriate measurements, they’re not complete. The most important metric, is outcomes. How is our work moving the needle towards a cure? Every effective board of directors knows their organization’s strategic and operational plans should have defined goals, and the ability to measure results.
A couple years ago, I met with a group of supporters, and one asked why we had devoted half a percent less to research in that year than the one prior. I explained our need to invest in our aging infrastructure so that we could continue to grow, while supporting our volunteers’ efforts efficiently. As a businessman, he understood this, but still wanted us to find a way to cut expenses.
So I asked the group if they’d rather support an organization which directs 90 cents of every $1 to the mission or one that spends 85 cents on the mission. They all agreed upon the first. But when I suggested the second organization could be making more research progress, they all agreed that would be the better investment of a charitable dollar. This illustrates why outcomes cannot be divorced from other metrics, but non-profit leaders, as stewards of donor dollars and the public trust, need to know what those outcomes are, and we need to be able to communicate them so donors can make informed decisions.
So what is the St. Baldrick’s Foundation doing to take the fight to a new level?
Given the scarcity of resources, and increasing demands on the non-profit sector to address growing societal needs, future success lies in collaboration and public education.
One of the ways the St. Baldrick’s Foundation is adapting is our recent venture into advocacy. Last time we spoke, I explained that at the time of our founding, the board decided not to focus on advocacy since many organizations already were.
However, we observed the many challenges of passing legislation to aid children with cancer, and then the separate process of getting funds appropriated. Then we saw that the will of constituents and legislators can effectively be “overruled” at the regulatory or federal research levels and we considered what if anything we could do about that. We realized, the comparatively small size of the childhood cancer community (compared to other health communities) was being drown out. A small percentage of our organization’s supporters are families of children with cancer, so we realized we had a large group of people who cared about the kids and who might lend their voices to help our government see that everyone can agree that prioritizing the needs of sick children is something we all believe in. Even in these partisan times.
So, in the last year, we've hired an experienced health advocacy expert, Lisa Parks as our Senior Director for Advocacy, and began an official advocacy program, Speak Up for Kids’ Cancer. We recruited Amy Bucher, a parent, St. Baldrick’s board member, and a former teacher and business executive to lead this effort. Amy is uniquely qualified to educate the public, legislators and corporate America on our shared mission.
We are also active members of the Alliance for Childhood Cancer, and are now partnering with Children’s Cause for Cancer Advocacy and are building our own advocacy committee. Simply stated, our goal is to identify opportunities to advance and expand childhood cancer research at the legislative and regulatory levels and pursue them.
What other thoughts do you want to leave us with?
I’m so proud of the many accomplishments of the childhood cancer research community, but I’m frustrated because we have limited means to trumpet them! We rely on press releases when the public digests information in sound bytes, and we use social media – thank goodness for social media! What I’m getting at, is charities are at a disadvantage and yet still need to compete with each other and other causes as well as corporations for a share of the public’s attention. Corporate and non-profit budgets alike are all “tight” these days, but corporations have budget line items we don’t have, and the general public often frowns upon us having. I’m not convinced these limitations help us achieve our missions efficiently, which is a priority for everyone.
Is it efficient to take ten years to do something, when we could do it in half the time with greater resources? In our community, the consequences are children’s lives, and we cannot put a dollar value on them.
In 1961, when President Kennedy challenged America to send a man safely to the moon and back by the end of the decade, he didn't say, “but only if we stay within a certain budget.” The goal was the moon, and the reason to shoot for the moon was to expand human knowledge, extend man’s exploration, and advance science. He also acknowledged it would be hard and expensive. We have no less ambitious a mission, and probably a more difficult one. It’s also more precious as our children’s lives depend upon it and with them, our future.
The notion of shared sacrifice is something our organization was built upon. The World War II generation understood that each citizen must work and sacrifice together to achieve victory. Our country came together again to win the space race. It’s time we pull together again to finally win the war on cancer, and ensure that children fighting cancer not only survive, but thrive.
Thank you very much for talking with us Kathleen! We look forward to future updates on your collaboration with Stand Up To Cancer on the Pediatric Dream Team!!