This blog was guest-written by Dr. Sara Selig, Co-Founder and Director of the Melanoma Research Foundation’s CURE OM initiative.
Gregg and I were young, deeply in love and had the rest of our lives ahead of us, or so we thought. We were engaged in life and excited for the future. I was finishing my last year of medical school and Gregg was in the early part of his career as a clinical psychologist.
And then our world fell apart. After noticing changes in his vision, Gregg’s ophthalmologist discovered a spot in the back of his eye. That “bump” was diagnosed as melanoma of the eye, or ocular melanoma (OM).
After Gregg’s diagnosis, we tried to learn as much as we could, as quickly as we could. We learned how serious the disease is—of the 2,000 Americans diagnosed with OM each year, about half will experience spreading beyond the eye. Once the cancer spreads, it is almost always fatal. Although rare, several well-known public figures have been diagnosed with OM. In fact, Dr. Oliver Sacks recently wrote poignantly about his experience with this same cancer.
Gregg’s eye was treated. We tried to get back into our “normal” lives, yet the uncertainty weighed on us. One year later our world fell apart again.
The cancer had spread to Gregg’s liver and we were told he had 6 months to live. We were devastated. We, again, learned as much as we could about metastatic OM and made treatment decisions based on as much data as we could gather. Gregg was treated, and treated again, and again, and again—the majority of the treatments were clinical trials as there were, and are, no FDA-approved treatments for metastatic OM. Rather than six months, these efforts gave Gregg and me another four years together, though it wasn’t always easy. In that time we focused on living life with as much energy and love as possible.
While advocating for Gregg’s health, we worked hard to advocate for the entire OM community—we wanted to help create a community of patient and research support that hadn’t existed when Gregg was diagnosed. Gregg inspired others as he shared publicly his story, his courage, and his vision for a strongly connected, dedicated, and focused OM community. In 2011, Gregg and I co-founded the CURE OM (Community United for Research and Education of Ocular Melanoma) initiative with the Melanoma Research Foundation. To date, we have built robust patient education and support services and have awarded nearly $1 million in OM research funding. At the heart of CURE OM are patients and their loved ones—the patient-centered vision Gregg and I had from the beginning. The backbone of the patient support and education is the annual Eyes on a Cure: Patient and Caregiver Symposium. This inspiring gathering of support, camaraderie and education reminds us of the strength in community.
The inaugural Eyes on a Cure symposium was held in partnership with Thomas Jefferson University and the Sidney Kimmel Cancer Center in 2012, just 5 months after Gregg died from complications from his disease. We worked closely with the dedicated team at Jefferson, led by Dr. Takami Sato, and received feedback that the meeting provided much needed support and information to patients and their loved ones.
We are thrilled to be partnering again with Jefferson, now 3 years later, to host the 4th Annual Eyes on a Cure March 6-8, 2015! Like past years, we are bringing together patients, family members, and doctors from around the world. We will offer support and networking opportunities for patients and family members as well as up to date information about treatment options and research. This year we continue to spotlight research and advocacy. The Eyes on a Cure symposium would not be as impactful without the dedicated team of researchers and clinicians at Jefferson (including Dr. Takami Sato, as well as Drs. David Eschelman, Carin Gonsalves, and Dr. Rani Anné). We are also bringing in experts from Will’s Eye Hospital including Dr. Carol Shields, as well as Dr. Lynn Schuchter from the University of Pennsylvania, Dr. Richard Carvajal from Columbia University and Dr. Jason Luke from University of Chicago. This talented team of physicians will help share information about the latest treatment options and research to the patient community.
Although I wish with all my heart that Gregg and I would be attending the event together, I look forward to seeing other OM patients and survivors—it is a small community and many of us have become like family. I know our ongoing work to improve the lives of people affected by OM through Eyes on a Cure, the CURE OM initiative and with partners such as Jefferson, is one way in which Gregg continues to give back to the community that has given so much to us.