On June 4, 2022 the Clearity community of supporters, donors, volunteers, staff and participants gathered at the La Jolla home of founders Dr. Laura Shawver and Tracy Macuga to honor Scientific Director, Dr. Deborah Zajchowski and celebrate her retirement.
Dr. Deb’s personal remarks at the event chronicle the history of Clearity and the tremendous advancements made in ovarian cancer since the organization started in 2008.
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Thank you for this special recognition and thank you all for being here tonight!
A special thanks to Laura and Tracy for welcoming us into their home and to Maggie and her team for making it all happen!
As you might imagine, I am having mixed feelings right now. On the one hand, I am thrilled to be here with all of you and excited that I now have so much free time. But, I am also sad because I miss my regular interactions with you and the women who I have met because they have come to Clearity for help. I have learned so much from all of you and been touched in ways I never imagined possible.
As I think back over the past 13 years, my head and heart are filled with many memories, too many to share publically right now. I hope I will have time with each of you tonight to privately reminisce.
That said, I will still take a short time to share some of my thoughts about Clearity’s history in the context of what was happening in the OC world at that time.
As you know, at the end of 2007, Laura told me about her dream to bring the power of precision medicine to women with ovarian cancer and I eagerly offered my help. Little did I know that she was inviting me on an adventure that would last for more than a decade …. and provide me with a new vocation.
It is hard to believe now, but back then, the only treatments for ovarian cancer were cytotoxic chemotherapy drugs and there were few clinical trials that tested drugs that were not chemotherapies. It was also not common for women to ask their doctors questions—let alone ask about choosing a treatment that would match their tumor biology. Perhaps not surprisingly, getting the medical community excited about Clearity’s approach that involved tumor profiling was not easy…. but Laura was not deterred despite pushback from several KoLs at our meeting with them early on. We forged ahead and learned all we could about the molecular drivers of ovarian cancer growth and about possible targeted treatments in the hope that physicians would use biomarker-matched therapies for ovarian cancer like they were for people with other kinds of cancer. We helped many women get their tumors tested and learn how that information could be used to choose treatments that were standard or in clinical trials.
In early 2013, the first commercially available comprehensive genomic analysis of tumors was available to patients. This was a technological advance that revolutionized the diagnostic world. We could test for mutations in 182 genes instead of doing this one gene at a time (Today it is more than 500!). Results from this analysis gave us new insights into the ways that her cancer could be treated and we shared that information with her and her doctor.
And in 2014 (6 years after Clearity’s founding), we finally had the proof that biomarker-matched treatment could work for women with ovarian cancer. The PARP inhibitor olaparib was approved for patients who had a particular biomarker called BRCA. This was a major milestone. It was the first approved PARP inhibitor drug ever and also the first biomarker-directed therapy for ovarian cancer patients. And we celebrated and shared the good news we received from the Clearity patients who enrolled in and benefitted from those PARP inhibitors in the early trials.
In the next 6 years, we saw an amazing number of new approved indications for this and other PARP inhibitors and the first new treatment for women newly diagnosed with this disease in decades …one that could really make a difference —– and probably cure more women. And we have more new drugs in clinical trials now than ever before— all this signaling a likely surge of new treatment options in the coming years. And a lot more knowledge for Clearity to share.
In 2017, under Hillary’s leadership, Clearity partnered with the Susan Poorman Blackie Foundation to create the Steps Through OC program that provides women and their families with one-to-one ovarian cancer counseling. Together with the individualized treatment information education from our science team, each woman now has more support for her life with ovarian cancer.
As I look back, I am really proud to see how much we have achieved. From nothing, we built the Clearity infrastructure to enable and track the process for tumor testing, built several versions of a report to interpret tumor profile results—each one more elaborate than the last. We developed software for a database to store information about each patient’s tumor profile and her clinical history and have an IRB-approved protocol for a data repository. With patient consent, we performed and published research using that data. We created a website to educate patients about standard treatments and anyone in the world can access this information. We have built a user-friendly individualized search tool to find clinical trials for which the patient is likely to be eligible. This saves lots of time and disappointment for both the patient and the oncologist. In addition, this trial finder has been incomparably enhanced by linking to the results for drugs being tested in those trials thereby enabling their prioritization. New advances, knowledge, technologies, and infrastructure will inevitably result in the replacement of some of these tools but that evolution is essential for Clearity to stay at the forefront of ovarian cancer patient and family support.
We have built many educational aids. But, what is most important is that we have provided scientifically credible information along with an empathetic ear and a hand to hold to help each women make treatment decisions with her physicians. We know from their expressions of gratitude that we have made a difference for thousands of women.
Every step of the way, I have been fortunate to have the advice and assistance of many of you—without whom none of this could have been accomplished. I am sorry that I cannot mention all of you individually but please know that I value all of the efforts that you have made—whether you be a current or former board or staff member, a volunteer, a donor friend, or one of the patients and caregivers who have taught me so much about life. Laura, without you, I would not be telling this story today. You have inspired me from day one and I thank you for believing in me and giving me this opportunity of a lifetime. Hillary, collaborating with you has been an honor. I have truly enjoyed our interactions and learned much from our brainstorming sessions. I also want to specially thank a few people who have worked directly with me for many of these years. Dr. Anne Mette Buhl has become an ovarian cancer expert during this time and has made our trial finder the excellent resource that it is today and continues to provide her incredible expertise to our patients. Kathy Zajchowski –who just happens to be my sister –is the quiet engine that keeps our patient support service running efficiently, making sure that our patients have been helped in a timely way and ensuring the integrity of our tumor testing process, reporting, and data records entry. I also want to thank Dr. Marc Whitlow who leveraged his scientific background and programming skills to build the software that houses all of our patient data.
Thank you all again. It has been a tremendous honor to be a part of this organization. I am fortunate to have been on this journey of tremendous growth with you and look forward to the successes that lie ahead.
Now, it is time to party!