John Lehr was named President and Chief Executive Officer of CureSearch National Childhood Cancer Foundation in November 2009. In this capacity, he is responsible for establishing the direction of the nonprofit Foundation, supervising the 136 person staff and managing fundraising, advocacy and awareness initiatives.Mr. Lehr brings more than 20 years of healthcare and fundraising experience to CureSearch. He established the Cystic Fibrosis Foundation’s Major and Planned Giving Program that today brings in an average of $25M annually. As a Vice President at the CF Foundation, Mr. Lehr oversaw their $175M major gifts campaign.Upon joining CureSearch John said “Eradicating childhood cancer is a mission I feel deep in my heart. All you need to do is to see a picture of a child with cancer with their family, and you just want to do everything in your power to make things better for them.”Our mission is one: Cure Childhood Cancer.
John, CureSearch has a large collection of hats it wears in the childhood cancer world. We’d love to have you describe CureSearch’s mission and how you’re going to accomplish it.
The vision of CureSearch for Children’s Cancer is to guarantee a cure for every child with cancer.
Our mission is to fund and support collaborative research and to provide information and educational resources to all those affected by children’s cancer.
Would you tell us how CureSearch is funded?
More specifically, CureSearch for Children’s Cancer funds and supports the research of the Children’s Oncology Group, the world’s largest cooperative pediatric cancer research organization—essentially a “cancer center without walls.”
CureSearch for Children’s Cancer is the grantee for the Children’s Oncology Group from the National Cancer Institute. We receive funds from NCI and distribute them to more than 230 Children’s Oncology Group member institutions in North America and around the world in support of clinical trials.
Looking at the 2008 financials, the Program Expenses (the percent of total budget spent on the programs and services a charity exists to deliver) are 95%. That compares very well with the Lance Armstrong Foundation (77%), Susan G Komen (86%) and the Cystic Fibrosis Foundation (84%). Can you explain the program expenses and tell us what percent is directed to research by COG?
In addition, we raise private philanthropic and non-governmental funds, which we use to support the Children’s Oncology Group.
Everything CureSearch does – directly and indirectly – supports the research of the COG. Our goal is to ensure that the COG has all the resources it needs to run therapeutic and non-therapeutic trials. We know we need to do a great deal more, in terms of private philanthropy, to fully fund the COG.
You’ve been at CureSearch for a little over eight months. Coming in you had a vision of the existing organization, ideas for change, and goals. What’s the interim status report? What’s pleasantly surprised you and where you have encountered the most challenges?
CureSearch is working to engage all sectors – philanthropic, corporate, industry, and government – to raise more money for children’s cancer research.
Two follow up questions. First, you mention a built-in network through COG, can you tell us of efforts to expand the distribution of information about CureSearch and other childhood cancer groups within COG hospitals? We think this early education of families would help focus any future participation or effort on the part of the family.
For voluntary healthcare organizations like ours, community events are the most effective way to raise money and awareness. We are fortunate to have a built-in network, through the 230 COG institutions, to mobilize families, providers and corporations at the local level in support of clinical research for children’s cancer. I have been very pleased by the overwhelmingly positive response of all our constituents to our new direction.
Over the last eight months we have been visiting the principal investigators at COG hospitals across the country. Overwhelmingly, these individuals and institutions support CureSearch, and these meetings have allowed us to share information about the resources we provide to patients and families. For example, we know the hospitals use our Web site (www.curesearch.org) with families, and it is important that they know we are revising it to make it even more helpful. Additionally, CureSearch provides a Family Handbook through the hospitals to every newly diagnosed child’s family, and we have learned more about the value of this tool and received feedback to make it even better. In part, we are ensuring that we include information, in an appropriate way, to let newly diagnosed families know that we are available as a resource – and eventually as an organized force with which they can get involved to raise money and awareness about children’s cancer and the need for research.
And not to pass this one up, you refer to a new direction, can you expand on that?
The new direction is this grassroots effort – we are reaching out to the families and health care providers who are already at our COG hospitals and inviting them to get more involved in our efforts, overall. We are putting in place fundraising professionals in multiple markets across the country to build local relationships and spearhead local efforts. This multi-chapter approach – while the basis of many foundations like ours – has not been part of CureSearch’s history. We are seeing great return by putting this in place.
What are the biggest challenges we face in increasing awareness and funding and where you see CureSearch in 2 years and in 10 years?
The marketplace for philanthropic giving is very crowded, and adults typically give to issues and causes that affect them personally – so breast cancer, prostate cancer, heart disease garner more attention. Yet, 13,500 children and adolescents are diagnosed with cancer each year, so we must redouble our efforts to get the word out about the need for increased funding.
We agree, if not sooner. You mention CureSearch being in all major markets; what does that look like?
In 2 years, I’d like to see CureSearch in all major markets around the country, significantly increasing funds for the COG.
In 10 years, I’d like the cure rate for children’s cancers to be 100%.
We have COG member institutions in 230 locations in North America and around the world. CureSearch should be a major force in all of those markets, because the money we raise supports collaborative children’s cancer research that comes back to those local communities through the COG member institutions. As such, CureSearch for Children’s Cancer is an international organization with a very local presence.
Your time with the Cystic Fibrosis Foundation interests us. In PAC2’s early research CFF was referenced as a notable “public-private” network that successfully raised awareness and funds for a “non-profitable” and “rare” disease; as runs the paradigm for childhood cancer. What did you learn at CFF that you are transferring to your work at CureSearch?
At the Cystic Fibrosis Foundation (CFF), I learned the importance of “people power.” CF is a very rare disease, with a patient population much smaller than pediatric cancer. Yet, through a committed network of patients, families, friends, volunteers, and corporations, CFF raises $140 million each year from private philanthropy. I know we have the same potential to raise that kind of money, and more, for children’s cancer research.
Along the lines of ‘partnerships’, are there any existing tax incentives for pharmaceuticals to support research into childhood cancer treatments? Are there other means to facilitate a partnership with industry, essentially a ‘donation-in-kind’?
The Cystic Fibrosis Foundation was also very successful at using their funds to accelerate CF research. Through partnerships with the biotech industry, they have developed a pipeline of therapies specifically for CF. Several of those therapies have the potential to correct the basic defect in CF. With the proper funding, we can ensure that the COG has the resources to continue making the breakthroughs that give all patients and families hope for a cure.
Because we know that only research will cure children’s cancer, industry involvement is critical to accelerate the pace of research. Pharmaceutical companies that test novel cancer therapies on pediatric populations are eligible for limited patent extension. That is an important incentive for them to work with the COG. We are looking at creative ways to further stimulate industry involvement in children’s cancer research. Other voluntary healthcare organizations – like the Cystic Fibrosis Foundation – have been very successful building venture philanthropy partnerships with the biotech industry. We’d like to promote the same thing at CureSearch.
Can you explain what role CureSearch and COG each play in determining what research is funded and what promising research results have you seen in the last year from those grants?
The COG is responsible for determining what research is funded. The COG has a number of layers to determine this, including its Executive Committee, Scientific Chairs Committee, and the general Voting Body. There have been a number of important breakthroughs in research. For example, in neuroblastoma, a new experimental immunotherapy treatment used in a COG clinical trial resulted in a 20% improvement in cure rates compared to the standard treatment used in the past.
While The CureSearch Walks are the foundation of your fundraising efforts, there are many other opportunities for people to organize and participate in fundraising. Can you give some examples where you’ve worked with parents to organize and hold ‘out-of-the-box’, almost personalized fundraising events that have been successful?
We work in partnership with many family groups to support children’s cancer research. For example, the Pride Family and their friends have been holding golf tournaments and galas in the Chicago area for 10 years in support of the CureSearch and the COG. This year, they crossed the $1 million mark in funds raised. Sammy Keziah and his family in North Carolina have been holding a “Shoot” each year that has raised hundreds of thousands of dollars for CureSearch. A group of parents in Iowa raised a lot of money last year for CureSearch by selling T-shirts in the colors of Iowa U and Iowa State that said Beat Cancer. We are going to significantly expand that program this year. We are very open to working with families on “out-of-the-box” fundraising ideas, and welcome all ideas.
We think that achieving awareness outside of the childhood cancer community is a vital step to the success of overall future funding efforts. Can you describe your efforts in this arena and any future plans?
We have an exciting announcement about a celebrity partnership later this year that we think will help us reach well beyond the children’s cancer community. Stay tuned!
On the advocacy front, an important facet of CureSearch is the work you do with the House and Senate. While we’re sure it’s frustrating, we all appreciate the work CureSearch has accomplished in that area. Can you give us your view from 30,000 feet on the American government’s recognition (or lack thereof) of the desperate need for additional childhood cancer research funding, what the stumbling blocks are and how CureSearch and our readers can knock those blocks over?
CureSearch was very pleased when the Caroline Pryce Walker Conquer Childhood Cancer Act was passed in 2008. (Not one member of Congress voted against the bill.) We all expected this was the beginning of an increased investment by the federal government in children’s cancer research. Today, the research funding authorized by the bill is still unfunded. At our Reach the Day event on June 21-22, our advocates are going back to Congress to ask them to fund the Act.
Just to be clear, when you say authorized research funding is still unfunded, was any part of the bill funded? And, while we don’t expect you to unravel the secrets of the universe, but can you explain why a bill that that didn’t receive one nay vote would NOT be funded?
The Caroline Pryce Walker Conquer Childhood Cancer Act has three provisions:
The CureSearch Advocacy Network and Reach the Day. Would you explain how the Advocacy Network is organized and operates? And with one of the most important days of the year coming up, please tell the readers why they need to be in DC June 21-22.
“(1) encourage the support for pediatric cancer research and other activities related to pediatric cancer;
Provisions 2 and 3 received funding in the last appropriation cycle:
(2) establish a comprehensive national childhood cancer registry; and
(3) provide informational services to patients and families affected by childhood cancer.”
- $3 million was appropriated in the Labor, Health and Human Services appropriation for the Centers for Disease Control for a pediatric cancer registry. CDC is instructed to report to Congress how they plan to implement this registry.
- $1 million was appropriated in the Office of the Secretary of the Department of Health and Human Services for informational services to patients and families. HHS has placed the responsibility for the call for letters of intent at the National Cancer Institute. We are awaiting further information from NCI.
The first provision, related to research, has not received any funding. There is no single or simple explanation as to why this important funding has not been provided – undoubtedly the economy and the many competing demands on the federal budget play a role. However, we will continue to impress upon elected officials the critical need for funding for children’s cancer research.
We need “people power” to convince Congress to fund the Act they already passed. That is why we are so eager for people to attend Reach the Day this June. We also need to keep pressure on all year round. The CureSearch Advocacy Network is critical in those efforts.
People can join the network and register for Reach the Day by going to our website www.CureSearch.org.
We’ve talked to other organizations about Childhood Cancer Charities Unite, or C3. Are you familiar with this group and do you have any plans to work with them?
We are familiar with C3 and support their work. We have been involved through our Hope Street Kids program, and expect to become even more involved in the future. Having a united front is critical if we are going to cure children’s cancers.
Outside of our readers working directly with CureSearch (which we highly recommend!), what two specific suggestions would you make for us all to become more effective advocates for childhood cancer?
I am a fundraiser at heart. The more money we raise philanthropically from people across the country, the greater the awareness. Look at Komen, for example. They started raising money locally through grassroots efforts. Today, they raise hundreds of millions of dollars each year, and NFL players wear pink wrist bands and shoes to show their solidarity. As we raise more and more money, we will attract greater attention for children’s cancer research.
John, we all appreciate you participating in the PAC2 Childhood Cancer Advocacy Series, and certainly wish you and CureSearch success, thank you again. CureSearchCureSearch WalksCureSearch Advocacy Network Reach the Day
- Join other advocates in Washington DC to fight for funding on June 21 & 22, 2010