Throughout 2015, inherited BRCA cancer and its huge impact on families and society have been the focus of many discussions as well as newspaper and media coverage nationwide. The urgency to eliminate the threat of inheriting cancer is more recognized than ever. Many patients and families affected by BRCA cancer told us what mattered most to them: preventing all types of BRCA cancers while keeping people healthy and whole. We believe this is possible.
We knew a goal this ambitious would require a whole different kind of thinking. Even by January of this year, twenty years after BRCA was discovered, no integrated research initiative existed to achieve this goal. No research and development program was planned by pharmaceutical companies. Not a single scientific meeting on preventing inherited BRCA cancer had ever been held. Complicating this is the sobering fact that public funding of cancer research has been reduced 25 percent over the past decade and overwhelmingly focused on treating cancer after it occurs rather than preventing it. It was clear that a better future for our children and millions of families, across generations, would require significant change.
So we started HeritX to be this change:
- In March, we founded HeritX, the first organization solely focused on preventing inherited cancer.
In April, Doug Hager, one of the leading cancer drug developers across the biopharmaceutical industry, joined our team.
We engaged more than 100 leaders worldwide in science, medicine and technology – inside and outside the BRCA field – to focus on BRCA prevention and brainstorm solutions.
- We met with leaders in more than 20 pharmaceutical companies to put BRCA prevention on their radar.
- In June, we held our first BRCA prevention workshop in Westport, CT, with leaders from NIH, Harvard and other universities, and the private sector.
In summer, Kirk Patrick, a partner at Gibson, Dunn & Crutcher, and Jay Rasulo, the Chief Financial Officer of The Walt Disney Company, joined the Board of Trustees; Jay as HeritX Treasurer.
- We held one-day meetings at Johns Hopkins University, the Cleveland Clinic, and the Huntsman Cancer Institute to identify pathways to BRCA prevention.
- Alan Ashworth, PhD, FRS (UCSF, co-discoverer BRCA2), Lawrence Brody, PhD (CSO of Inherited Diseases, NIH), Ora Karp Gordon, MD (UCLA, medical genetics expert), Claude Nicaise, MD (orphan disease strategy expert) and Grant Williams, MD (FDA expert) joined as scientific advisors.
- David Parkinson, MD and Melissa Ashlock, MD joined the HeritX advisory board to add perspective and experience as leaders in the venture philanthropy space through their work with the Multiple Myeloma Research Foundation and Cystic Fibrosis Foundation.
- The BRCA Data Analysis Award was created in partnership with international biostatistics societies to stimulate data and computational research on preventing inherited BRCA cancer.
- Throughout the year, more people became curious, learned about our mission at HeritX, and joined us in believing that the time is right for prevention.
In November, this culminated with HeritX’s international Banbury Conference in partnership with the renowned Cold Spring Harbor Laboratory in New York. Thirty world-class researchers, drug developers, FDA experts and stakeholders attended this first-ever conference on preventing inherited BRCA cancer.
These experts identified several ways to approach BRCA prevention. The result is that our community now has a roadmap of the research needed to prevent inherited BRCA cancer. The next research steps are clear. With your help, we will be able to launch these steps in early 2016. We have already started to work on innovative projects to pre-empt and overcome potential hurdles for the research community so that we can accelerate progress quickly. Dr. Alan Ashworth, co-discoverer of BRCA2, President of the Helen Diller Cancer Center at UCSF, and co-director of the UCSF Center for BRCA Research, summed up the meeting and the impact of HeritX well:
“I’ve been working in this area now for more than 20 years. One of the things that became clear at this meeting is still how little we know about how cancer develops in BRCA mutation carriers and how we might prevent it. I think the future holds great promise for an understanding with a coordinated approach … I believe the HeritX initiative is unique because I don’t see many other people paying attention to preventative measures in BRCA mutation carriers. It’s a very difficult scientific problem. It needs something above and beyond the existing funding paradigms and existing approaches, so that’s why I’m really inspired by the HeritX approach.”
The Banbury Conference was not only critical for identifying the path forward, it also created an unprecedented excitement and commitment among many scientists, physicians, innovators and supporters about BRCA prevention. This excitement and commitment is hugely inspiring to us because we know that people with passion are the foundation for changing the world.
2015 was only the beginning of this journey. Much more needs to be done, especially to ensure that we keep accelerating the momentum, and that researchers and drug developers have the means to implement the roadmap to prevention swiftly.
You can be part of what has already been called one of the most transformative health initiatives of our time. Accelerate making prevention a reality – with a donation today – for our children, for families, and for all future generations.
Thank you for joining this journey – to a world in which carrying cancer genes no longer means developing cancer.