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CURE OM 10 Years Later

Guest blog from Dr. Sara Selig, Co-Founder & Director, CURE Ocular Melanoma (CURE OM): 

saraMay Day is an important day in my life. It is the day my best friend and eventual husband Gregg proposed to me and asked me to spend a lifetime of adventures together. Later, after melanoma had entered into our lives, we recognized May Day as the start to Melanoma Awareness Month. In our case, it was eye melanoma, or ocular melanoma (OM).

I will never forget the day Gregg came to me and told me he was seeing wavy lines in his vision while out on a run. Gregg and I were in the US for a few months taking a break from living and working in Nairobi, Kenya so that I could finish medical school and apply to residency training programs. Instead of the quick break it was supposed to be, it became a prolonged stay in the US for Gregg to get treatment for a cancer we had never even heard of before.

Gregg was officially diagnosed with ocular  melanoma – uveal (specifically, choroidal) melanoma – on October 31, 2006. For those who have experienced something similar, you know the day you or a loved one is diagnosed is a day you never forget. I can remember very specific details about our experiences that day, from being told in the morning Gregg had a “bump” in his eye to the evolution of it being called a “tumor” by day’s end. Gregg and I couldn’t have known then the impact this day would have on the rest of our lives.

After he was diagnosed, Gregg and I recognized right away how difficult it was to get accurate and up-to-date information about OM and how difficult it was to connect with other patients. We felt scared and alone. Gregg and I immediately began a mission to connect with doctors and researchers as we sought additional opinions and input on Gregg’s care. Gregg also wanted to talk with others who had been in his shoes before but this proved difficult.

During Gregg’s treatment in the fall of 2006 and throughout the first year of intense follow-up, we felt we were “flying solo.” We craved information and connection with others who were going through something similar. Gregg and I were very grateful for the talented and dedicated doctors and nurses treating him and for the amazing love and support from our family and friends but we still had a sense of isolation. This sense of fear and isolation accelerated when, at Gregg’s one-year follow-up appointment, we learned the devastating news that Gregg’s cancer had spread to his liver and were told he had about six months to live. He was 35 years old.

saraWith the diagnosis of Gregg’s metastatic disease, it became even more painfully clear to us that not enough was known about OM and what information was known was difficult to access. We realized there was a dearth of collaboration among physicians and researchers in the field, not enough support for patients and caregivers, and an absence of research funding that could save Gregg’s life and the lives of other OM patients. Patient outcomes had not changed in more than 50 years.

We were not accepting Gregg’s fate lightly. Together, we spent countless hours seeking many opinions from experts around the world and researching a range of clinical trials based on any laboratory research results we could get our hands on.

Thankfully, Gregg’s cancer stabilized during early experimental treatments and he outlived the initial prognosis. At this point, in addition to the energy we were putting toward Gregg’s care, we began to steer our focus toward developing resources for the OM community at large. In 2011, we partnered with the Melanoma Research Foundation (MRF) to launch the CURE OM initiative and set our goals on establishing resources and support for patients and caregivers as well as for OM research in a way that had not existed when Gregg was diagnosed.

Through CURE OM, we developed accessible and up-to-date educational materials, an online discussion board specifically for OM patients and family members to connect globally and we started to organize and fund the research community.

In the spring of 2013 we awarded our first OM research grant. It was an emotional day full of hope and a big step forward for the OM community. Sadly, this was a day Gregg did not live to see first-hand, but he had laid the foundation for this to happen and I knew he was cheering us on from afar. This was a first step toward finding a cure and preventing other families from living through the devastation we had just endured. We wanted to ensure that other little girls would have their daddies by their side as they grow up. We hoped from our personal darkness we could create light.

saraI can’t believe it has been ten years since Gregg and I founded the CURE OM initiative. While I am acutely aware there is still much work to be done, as I reflect back over the years, I am buoyed by the great deal of progress we have made with the OM community. Through CURE OM, the MRF has: given out more than $2.1 million in research funding, organized more than 15 global science meetings, advocated to have OM included in the National Cancer Institute’s Cancer Genome Atlas Project, held more than ten patient and caregiver meetings, started global support groups, and more.

And just this week we launched a first of its kind OM patient registry—VISION—which was built step by step from the ground up together with patients, caregivers, clinicians and researchers from around the world. Through the VISION Registry, researchers will be able to identify important patterns in OM to advance us toward better treatments and ultimately a cure.

Thanks to the hard work and dedication of the many patients, caregivers, doctors, nurses, researchers and staff, the OM community has made remarkable progress over the past decade and the future is full of hope and promise.

I miss Gregg every day and am grateful for the roadmap he laid out for us:

“We have a VISION – Our TEAM – no matter what academic halls they walk, approaches they use, research they are pursuing – will be willing to collaborate, push the limits, try new approaches, think outside the box with us, be aggressive yet safe, be passionate, and integrative… a team who will help us beat the statistics and help us make the unexpected happen.”

After confronting the fear and isolation we felt during Gregg’s journey with OM, I feel extremely grateful for the OM community. Fifteen years after Gregg was diagnosed and ten years after founding CURE OM, my feelings of fear and isolation have evolved into a deep sense of appreciation for community and a strong feeling of hope for what is around the corner.

 

Life-saving advances in ocular melanoma research are made possible by the generosity of supporters like YOU. Please consider a tax-deductible donation today:

 

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