A review of the 13th Annual Eyes on a Cure: Ocular Melanoma Patient and Caregiver Symposium

Guest blog post from Ryann Daniels, MSSA, LISW our Education Program Coordinator, Rare Melanoma Subtypes as she recaps this year’s Eyes on a Cure: OM Patient & Caregiver Symposium:

From Friday, May 3rd, to Sunday, May 5th, the Melanoma Research Foundation’s (MRF) CURE OM initiative hosted its 13th annual Eyes on a Cure: Ocular Melanoma Patient and Caregiver Symposium in Boston, Massachusetts. The meeting was developed by and for patients and caregivers and was held in partnership with leading academic medical centers including Dana-Farber Cancer Institute, Mass Eye and Ear and Massachusetts General Cancer Center. The event served as an opportunity to gather patients, caregivers, and medical professionals all dedicated to advancing the understanding and treatment of ocular melanoma. A total of 42 gathered in person and an additional 38 people joined virtually. This format allowed for a diverse audience to engage with the presentations and discussions, fostering collaboration and knowledge-sharing among healthcare professionals, researchers, industry sponsors, patients and caregivers. 

Friday held a full day of sessions for patients and caregivers, starting with a patient and caregiver panel to set the tone of the day. The day then moved into two tracks from which participants could choose. The tracks allowed attendees to engage in sessions catered towards medical and research-based sessions and/or supportive therapy sessions that focused on the mind and body. In the medical and research-based track, the sessions focused on the latest in diagnosis and treatment of ocular melanoma, covering topics ranging from primary ocular melanoma care including the latest information about biopsies, radiation therapies, and post treatment care and surveillance. Following the patient journey, the afternoon sessions explored the latest in treatment approaches for metastatic ocular melanoma including liver directed therapies as well as systemic therapies such as innovative treatments like Tebentufusp and immunotherapies and included information about combining different treatment approaches. Meanwhile, in the supportive oncology track, the sessions focused on supportive services to help support the mind and body, offering insights into addressing the emotional and psychological aspects of managing one’s diagnosis. Attendees engaged in sessions focusing on managing fear of uncertainty, communicating with loved ones about diagnosis, and addressing sexual health needs. Additionally, attendees explored topics such as self-advocacy, community building through expressive arts and debunking nutrition myths. A big hit was the drum circle facilitated by an expressive arts therapist which allowed patients and caregivers the powerful opportunity to process emotion through music and movement. As the evening approached, the day concluded with small group breakout sessions that were tailored to the diverse emotional needs of attendees. Patients and family members were able to connect more personally, reflecting on what they had heard and learned during the day and ask questions they had for other patients. Reflecting on the day’s events, one attendee shared their sentiment, stating, “I thought all the doctors and researchers were just so patient and caring with us and our questions. The information was extremely useful and made me hopeful for the future.” 

On Saturday, the day unfolded with participating in Miles for Melanoma 5k to raise awareness about ocular melanoma as well as funding for programming and research and embarking on an unforgettable. The morning began gathering for the Miles for Melanoma 5K, where there were over 700 participants. After the 5k, attendees explored Boston through an iconic Duck Tour. Attendees bonded over shared experiences and laughter, forging connections with one another. These moments are a testament to the resilience and strength of the ocular melanoma community, and how powerful it is to come together.  

Science Sunday, the final day of the Eyes on a Cure: Ocular Melanoma Patient and Caregiver Symposium, offered attendees a front row seat in the world of scientific research and offered hope for all the advances that are in the pipeline now. Attendees were able to connect directly with researchers, deepen their understanding of ongoing research, ask questions and hear more about CURE OM ’s patient-powered ocular melanoma platform, VISION. One of the highlights of the day was the eagerly anticipated laboratory tours, offering participants a rare look behind the scenes into the inner workings of a scientific laboratory. Attendees embarked on a journey through the laboratories, witnessing first-hand the intricate processes and methodologies that underpin groundbreaking research initiatives. Attendees got to try their luck at lab skills themselves- pipetting and looking at ocular melanoma cells under the microscope.  Science Sunday served as a catalyst for dialogue and collaboration, fostering meaningful connections between researchers, caregivers, and patients. 

As we reflect on the weekend, let us be inspired by the thoughts expressed by one of the attendees: “Attending the Eyes on a Cure symposium was an extraordinary experience and unforgettable weekend. I met fellow ocular melanoma patients for the first time and found a supportive community that truly understands the journey of living with an OM cancer diagnosis. Science Sunday and touring the OM research lab was incredible. It was so surreal to be standing in the very room where researchers and doctors will hopefully continue to make progress and advancements and find a cure for this awful disease.”