Less than a year since it was founded, the BRCA Foundation has already done an impressive job of matching its commitment to helping uncover new options for cancer treatment with a solid track record of philanthropy.
Established in early 2016 by NetSuite founder Evan Goldberg and his wife Cindy Goldberg (prior to NetSuite’s acquisition by Oracle, a deal which closed last month), the initial $10 million grant made by the couple is enabling cancer teams from three of the country’s most prestigious medical research institutions – Stanford University, Harvard University and the University of California, San Francisco (UCSF) – to work together on the common goal of accelerating breakthrough research into cancers caused by mutations of the BRCA genes that, in most humans, produce valuable tumor suppressor proteins.
That’s important, because as Goldberg points out, women and men – but particularly women – who carry inherited mutations in BRCA1 and BRCA2 are at significantly higher risk of developing cancer than those born without those mutations. Specifically, these mutations increase the risk of breast and ovarian cancers, but are also associated with higher risk for other cancers, including those of the pancreas and prostate.
More recently, at the end of November 2016, the BRCA Foundation went on to announce a $1.5 million grant to the V Foundation for Cancer Research, a donation that will be matched by another charity, the Gray Foundation. Again, this money will be used to focus on cancers caused by these mutations.
As a result, this seemed like a good time for diginomica to catch up with Goldberg, to find out more about the personal motivations behind the Foundation and what its first year has taught the technology entrepreneur about the challenges of running a non-profit organization.
The back story
First, a bit of background: adopted soon after his birth, Goldberg was contacted 16 years ago by his birth mother, wanting to let him know that, following a second bout with breast cancer, she had received a positive genetic test for BRCA. Given its inherited nature, this was clearly going to be an issue that Goldberg and his own children would need to consider. At that time, BRCA testing was relatively new and barely understood by the wider public, including Goldberg himself. (Today, awareness is much higher, due in part to Angelina Jolie’s May 2013 announcement that she had undergone a preventative double mastectomy following her own positive BRCA test.)
In addition, both Goldberg’s biological and adoptive parents are of Ashkenazi Jewish descent – one of the ethnic and geographic groups with a much higher prevalence of harmful BRCA1 and BRCA2 mutations. Among the general population, one in 400 to 800 people carry the mutation; among Ashkenazi Jews, it’s more like one in 40. Shortly after that conversation with his birth mother, Goldberg got himself tested and found that he, too, carries the faulty BRCA1 gene. He says:
At the time, my oldest child, my daughter, was two, and while I knew it would affect my children, especially my daughters, I was also thinking, ‘Oh, but of course they’ll have this whole thing licked by the time she’s an adult.’
But a few years ago, I revisited this stance and what I found out about the state of research made me realize that, no, that might not be case. So I have an intensely personal interest in helping to catalyze progress on cancers that arise as a result of the BRCA gene.
In his conversations with oncologists and medical researchers, Goldberg uncovered an issue that he believes holds back cancer research, and one in which he sees a direct parallel with the enterprise software business; namely, that cancer research is often overly focused on the organ in which a tumor appears.
But it’s increasingly becoming clear that cancers that occur in different organs may have more in common with each other than you’d think, as they may share similarities in genetic triggers, molecular structure and so on. In other words, location of a cancer isn’t necessarily the key to getting cancer research to the next level. It’s a really antiquated way to look at it, says Goldberg, adding:
There seemed to me to be an opportunity here to cut across these boundaries and silos and look at cancer in a different way. If we can research cancer across organ types, looking at other factors, looking at it differently, we can make faster progress and that’s what everybody wants.
Now the way I think that connects with my software career, maybe, is that I felt inspired to cut across traditional corporate boundaries and silos. That’s what NetSuite’s always been about: instead of looking at software as a series of applications for different departments, we looked to cut across boundaries and create a system that’s really about running a business, a more holistic view of what you need to do to run a business.
In the cloud
It goes without saying that the BRCA Foundation runs on NetSuite. As I wrote earlier this year, non-profits are an increasingly important vertical for NetSuite, and at this year’s SuiteWorld conference, the company announced a string of new features and functions aiming to help organizations in this sector run more efficiently. At that time, there were around 600 such organizations using NetSuite – and the BRCA Foundation is another to add to the list. Says Goldberg:
NetSuite.org [the company’s corporate citizenship arm] has been a passion of mine, which is why I brought in David Geilhufe to run that business, right around the time we went public [in 2007] to build this for us. I felt with the resources we had as a public company, we had more ability and more responsibility to do more for non-profits. But it’s actually been a great win for the company, too. We’ve been able to get employees involved in some fantastic non-profits, helping them to implement – and that’s something I took advantage of immediately for the BRCA Foundation.
Take, for example, the BRCA Registry set up by the Foundation in its first year of existence. This acts as a ‘clearing house’ where potential research subjects can share their details with medical researchers. It contains details of individuals who have tested positive for BRCA gene mutations, some of whom have experienced cancer and many who have not. Either way, they all sign up so that the Foundation can alert them by emails to medical research programmes for which they may wish to volunteer. These emails, meanwhile, can be targeted at different groups of registry signees – for example, males aged 50-plus who’ve tested positive for BRCA1. Says Goldberg:
People who get tested positive, like myself, are very, very motivated to take part in studies, in many cases way before they ever experience cancer, both for their own sake and for their family members – but developing the registry was a very complex process. There are a lot of rules around privacy and the security of medical details that we have to follow and, luckily, NetSuite has that built-in expertise, so of course we leveraged it. The entire BRCA Registry was built on the NetSuite platform by our SuiteVolunteers [NetSuite employee-volunteers].
In addition, he adds, the BRCA Foundation is now making extensive use of the donor management functions of NetSuite’s non-profit offering as it works to increase its size and reach. And, as a customer, Goldberg admits to providing a steady flow of feedback to NetSuite developers on his experiences:
I really believe that’s important, not just for the Foundation, but because the non-profit sector is so important to NetSuite. Also, the non-profit world is constantly growing, and will continue to grow as, potentially, governments do less. So it’s really important that non-profits have what they need to run their organizations professionally and reliably.
Image credit - Oracle/NetSuite
Disclosure - At time of writing, NetSuite is a premier partner of diginomica.