MRF Blog

In Chrisi's Words: Coming Together to CURE OM

October 19, 2016 | Categories: Events, Ocular Melanoma, Patient Stories

When you have cancer, particularly a rare cancer like ocular melanoma, one of the most important things is to connect with others who understand what you are experiencing. Attending the Eyes on a Cure: Patient and Caregiver Symposium the last two years has given me the chance to both meet other patients and to hear from some of the best doctors in the field and has truly shaped how I have dealt with my cancer diagnosis.

In July of 2014, after having several eye exams, I traveled from my home state of North Carolina to Wills Eye Hospital in Philadelphia. There, my diagnosis was confirmed: it was ocular melanoma (OM). I began to receive radiation plaque therapy and I continue to go back to Wills Eye for my follow-up appointments. On one of these visits in March 2015, I attended my first Melanoma Research Foundation (MRF) CURE OM symposium. It was at that symposium that I formed some very close friendships in the OM community, people I still see and talk to regularly. Thanks to the MRF’s CURE OM initiative, I not only made some great friends in the ocular melanoma community, I also learned an incredible amount from the dedicated panel of medical professionals who spoke about the latest treatments and medical procedures.

As a result of the positive experience I had the previous year, I made sure to attend the 5th Annual Eyes on a Cure: Patient and Caregiver Symposium in Atlanta, GA, in March of last year. My mom was able to attend with me this time, and it felt great to have her support. There were peer led support group discussions, regarding topics such as scanxiety, as well as social work breakout groups for those who are newly diagnosed and also for patients who are dealing with metastatic disease. These groups helped people connect with one another and feel that their experiences, concerns and stories were being heard. I was especially touched by the patients and caregivers who so graciously shared their experience with everyone. The symposium wrapped up with a variety of program updates as well as other fundraising ideas and opportunities. Perhaps the most exciting announcement of the weekend, from my perspective, was the announcement that the 2016 #CUREOM Unite! campaign would be committed to funding the creation of a national registry of OM patients.

When I reflect back on the symposiums I have attended, what sticks out to me most is how many doctors, researchers and others took time out of their busy schedules to come together to provide valuable information to those of us affected by OM. We are all joined together by a rare eye cancer and the sense of community that these events evoke is truly special.

The 2017 Eyes on a Cure: Patient and Caregiver Symposium in Washington, DC, offers a great opportunity to not only attend a weekend of learning and gathering, but also a chance to participate in Hill Day. It will be an exciting and educational event and I can’t wait to meet other people in the OM community in DC next year!

 

Join Chrisi at the 2017 Eyes on a Cure: Patient and Caregiver Symposium!

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