Stewardship Report Fall 2022 - 2023
CURE OM (Community United for Research and Education of Ocular Melanoma) is the Melanoma Research Foundation’s (MRF) initiative created to increase awareness, education and research funding for ocular melanoma (OM), while improving the lives of people affected by this disease. Founded in 2011 by Drs. Gregg Stracks and Sara Selig, together an OM patient and caregiver team, CURE OM mirrors the MRF’s tri-partite mission of research, education and advocacy. CURE OM aims to accelerate research, find new and effective treatment options and to increase awareness and support of patients, clinicians and researchers. To date, CURE OM has funded over $2.4 million in OM research and pioneered international collaborations, innovative patient support resources and patient-powered scientific initiatives like the VISION Platform (VISION). CURE OM excels because of the hard work and dedication of its Patient and Scientific Steering Committees and the generosity of the OM community.
RESEARCH & SCIENCE
GLOBAL SCIENCE MEETING CURE OM holds an annual global science meeting in partnership with the Society for Melanoma Research Congress which meets every fall. In the fall of 2022, the meeting was held in Edinburgh, Scotland where the CURE OM Global Science Meeting brought together an interdisciplinary group of researchers and clinicians from around the world to talk about the latest ocular melanoma (OM) research advances and to focus on ways to improve coordination and collaboration in the OM research field. Speakers and participants gathered in person and virtually from the US, Canada, Australia and around Europe. The next CURE OM Global Science Meeting will be held in Philadelphia in November 2023 and will continue pushing the research field forward- specifically, following up on increasing coordination and collaboration in the field, and advancing clinical trials and patient engagement in research.
ACCELERATING RESEARCH: PEER-REVIEWED RESEARCH GRANTS
The CURE OM initiative has awarded more than $2.38 million in peer-reviewed research grants focused on OM. The awarded grants have included a range of Team Science Awards, Established Investigator Awards, Career Development Awards and Medical Student Grants. In 2023 (to date), the MRF has been fortunate to award one Career Development Award and three Medical Student Grants specifically focused on OM research.
2023 TEAM SCIENCE AWARD: OPTIONS BRING HOPE
This year, the MRF is also fortunate to be able to offer an additional OM focused research award, the CURE OM Options Bring Hope Team Award in honor of Lindsay Zubeck. This award provides funding of up to $250,000 over a two-year period ($150,000 for year one and $100,000 for year two) to an investigative team whose research will advance treatment for all patients with metastatic uveal melanoma not limited by HLA type. Teams will consist of a principal investigator (PI) and at least one co-PI (both US-based and international scientists and research teams are eligible to apply). Teams consisting of both basic scientists and clinicians are encouraged, as is the inclusion of a junior scientist. This grant will be awarded in fall 2023.
RESEARCH & SCIENCE
2023 Ocular Melanoma Awardees
Daniel Kim - Medical Student Awardee Institution: Harvard Medical School Area of Research: “Real-world efficacy and clinical predictors of immunotherapy response among Veteran uveal melanoma patients”
Emily Gordon - Medical Student Awardee Institution: Columbia University Vagelos College of Physicians and Surgeons Area of Research: “Using Circulating Tumor DNA and Exosomes to Predict Clinical Outcomes in Patients with Metastatic Uveal Melanoma Receiving Systemic Immunotherapy or Liver-Directed Immunoembolization” Arina Nisanova - Medical Student Awardee Institution: University of California Davis Area of Research: “Risk Factor Analysis of Young Patients with Uveal Melanoma Treated with Proton Beam Therapy”
Xiaonan Xu, MD, PhD - Career Development Awardee Institution: H. Lee Moffitt Cancer Center & Research Institute Area of Research: “Understand metastasis of uveal melanoma in vivo via novel mouse models”
THE VISION PLATFORM Launched in May 2021, the VISION Platform (VISION) is in its 3rd year of recruitment with over 450 registered participants. VISION’s power is elevating the patient perspective by collecting patient-reported data. Working with an interdisciplinary and inter-institutional steering committee with patients and caregivers at its core, the VISION team published data from the first year of the VISION Registry in the 2022 VISION Data Report which can be accessed below. Updated data and new data will be provided in the 2023 VISION Registry Data Report expected to be published in the fall. The VISION team is currently working with partners and stakeholders to incorporate VISION into ongoing clinical trials. Additionally, VISION continues to work with its Steering Committee to incorporate patients' feedback and develop and implement new features to meet the needs of the ocular melanoma community.
Our international partners are actively helping to promote and recruit patient participants to VISION. By increasing global participation, VISION will be able to highlight regional trends, similarities and differences. OUR PARTNERS
2022 VISION Data Report at https://online.flippingbook.com/view/691627414/
Check out these NEW features!
Private and Safe OM Patient and Caregiver Discussion Forum VISION Clinical Trial Connector Tool Newly Established VISION Features:
EDUCATION & AWARENESS
ANNUAL EYES ON A CURE: OCULAR MELANOMA PATIENT AND CAREGIVER SYMPOSIUM
The 2023 Eyes on a Cure: OM Patient & Caregiver Symposium was held in Tampa, FL in partnership with Moffitt Cancer Center the first weekend of April. More than 60 patients and caregivers came together in person to connect with each other as well as with the dynamic and dedicated team of researchers and clinicians assembled. Participants and speakers came from around the US and Canada. Session topics included information about primary ocular melanoma (OM) disease, metastatic disease, advocacy, peer-support, as well as several sessions covering information about the latest research in the OM field. The meeting included “Science Sunday” for the first time which brought a series of OM research talks directly to patients and concluded with touring state of the art laboratories researching OM at Moffitt Cancer Center. Scan the QR code to view videos of the sessions:
EDUCATION & AWARENESS
SAVE THE DATE 2024 EYES ON A CURE: OM PATIENT AND CAREGIVER SYMPOSIUM AND MILES FOR MELANOMA 5K
We are pleased to announce that the 2024 in-person Eyes on a Cure: OM Patient and Caregiver Symposium will be held May 2 - 5, in Boston, MA. The meeting will be held in partnership with Dana-Farber Cancer Institute, Massachusetts Eye and Ear and the Massachusetts General Hospital Cancer Center. In addition to bringing information to patients about the latest in clinical care and research for OM, the meeting will also include opportunities for patients to access support, network and explore supportive care opportunities. The event will also include the New England Miles for Melanoma 5k event at the Franklin Park Zoo the morning of Saturday, May 4 where participants will raise awareness about research funding for OM. SUPPORT GROUPS Check out our current virtual OM support groups in partnership with the Thomas Jefferson University Hospital Department of Social Work and with the University of Denver Oncology Psychology Department.
CURE OM & Thomas Jefferson University Hospital - This group provides virtual support to individuals diagnosed with ocular melanoma (OM). The group is facilitated by a licensed social worker, and includes a mix of educational and wellness information, as well as space to connect with other patients. CURE OM & University of Denver, Ocular Melanoma Support Alliance - This group is a monthly virtual support group for those who are survivors and thrivers of ocular melanoma. The group identifies specific topics to explore with invited speakers for the first portion of each session and then a professionally facilitated open discussion rounds out each meeting. The CURE OM engagement and education team help match patients to the group that is right for them.
EDUCATION & AWARENESS
In November 2022, CURE OM launched its annual #EyeGetDilated awareness campaign, highlighting the importance of integrating eye health into an overall healthy lifestyle, including having regular dilated eye exams. The #EyeGetDilated campaign raises awareness about ocular melanoma (OM) and emphasizes the importance of early detection in saving lives. The campaign shared inspirational stories of OM patients and caregivers, to provide hope and support. Additionally, helpful educational resources were shared and distributed. #EYEGETDILATED The MRF was able to highlight patient and caregiver testimonials throughout the #EyeGetDilated campaign. Check out Nicolette's story HERE - https://melanoma.org/news-press/eyegetdilated-month- nicolettes-story/ If you are interested in sharing your story about your personal experience with OM, please email us at email@example.com.
MELANOMA AWARENESS MONTH
Melanoma Awareness Month (MAM) is a month long campaign celebrated in May. #GetNaked is the MRF’s trademarked award-winning cutaneous (skin) melanoma prevention, early detection and public awareness campaign that launches during Melanoma Awareness Month on May 1. With melanoma being more than skin cancer, #EyeGetDilated has been integrated into the month of awareness efforts. In recognition of Melanoma Awareness Month, we created a new graphic promoting OM awareness through the CURE OM #EyeGetDilated campaign.
We also promoted the annual #EyePatchDay in partnership with OcuMelUK and OcumelCa, held this year on May 19th, to raise awareness of OM by encouraging people to have regular eye tests and report any unusual symptoms to their healthcare professionals and to raise funds to help people affected by OM.
ADVOCACY DAYS 2023 For the first time since 2020, 31 melanoma advocates from 14 states gathered in Washington, DC to share their stories with lawmakers and advocate for melanoma research, increased access to telehealth, diversity in clinical trials and melanoma prevention. This annual event brings together patients, caregivers, survivors, thrivers and healthcare professionals across all melanoma subtypes to advance care for melanoma patients. OM patients joined in Advocacy Days to share their unique experiences with lawmakers who were alarmed at the current lack of resources for OM patients. Through the convening of the first-ever Rare Disease Listening Session at the Food and Drug Administration (FDA) as well as through feedback from OM patients, CURE OM has identified three key priorities of advocacy: telehealth policy for increased access for patients, increased funding in the Congressionally Directed Medical Research Programs (CDMRP) and increased clinical trial diversity. We believe by working towards these goals we will improve the lives and people living with OM and their families and get us closer to finding effective treatments, and ultimately a cure. To strengthen this work and expand as needed, CURE OM continues to work with partners to establish a collaborative patient and provider advocacy agenda. The MRF strives to represent all melanoma patients and to create an advocacy agenda reflective of the needs of all melanoma patients, including the unique needs of ocular melanoma (OM) patients, while harnessing and integrating the unique collective power of the patient community to advance our goals.
“Participating in advocacy days as an ocular melanoma patient has been an incredibly meaningful experience for me and my entire family. It's about being a part of something bigger, a community that is actively working to make a difference. Through advocacy, we're not only raising awareness but also paving the way for better support, research, and hope for those battling this disease. Together, we are making a lasting impact that will benefit generations to come.” -Ocular Melanoma Patient Advocate
40% of OM patients traveled over 50 miles to receive an official OM diagnosis.
WHY ADVOCATE FOR TELEHEATH FOR OM PATEINTS? Using data from CURE OM’s VISION Registry we have been able to identify that patients are traveling far distances to receive care for their OM. Together with patients, we have identified the expansion of pandemic-era telehealth flexibilities as a key priority for OM patients.
Almost 40% of rare disease patients reported traveling more than 60 miles for medical care.*
60% of OM patients traveled over 50 miles to receive treatment.
50% of OM patients traveled over 500 miles to receive treatment for metastatic disease.
*Reported in a 2020 survey conducted by the National Organization for rare Diseases (NORD)
MILES FOR MELANOMA
At Miles for Melanoma run/walks across the country, all eyes have been on the ocular melanoma (OM) community as CURE OM teams are making a strong showing to increase awareness about OM and raise life-saving funds for research, education and advocacy.
Ocular Melanoma (OM) Teams have raised $47,417.59 to date.
Number of CURE OM teams: 13
Thank you to our local ocular melanoma sponsors!
COMMUNITY FUNDRAISING YOUR NEXT STEP IS THE CURE 5K
In November 2017, Bernadette Boyle and Linda O’Brien, the race directors, held their first 5K at E.G. Simmons Park in Ruskin, FL. They continue holding events, adding on more registrants and increasing the dollars raised each year. To date they have raised over $65,000 and donated 100% of the money raised to CURE OM. Bernadette and Linda hope to bring awareness to this rare and orphan disease and remind everyone the importance of an annual eye dilated exam.
Your Next Step is the Cure hosted its sixth annual 5k on October 7th, 2023 to bring awareness and raise funds for OM.
New York Miles for Melanoma 5k October 21 Governor's Island, NY San Diego Miles for Melanoma 5k October 15 De Anza Cove Park San Diego, CA
Atlanta Miles for Melanoma 5k October 29 Brook Run Park Atlanta, GA
Fort Myers Miles for Melanoma 5k December 9 Jet Blue Park Fort Myers, FL Miami Miles for Melanoma 5k February 11 Miami Zoo, Miami, FL
12th Annual OM Science Meeting November 6 - 9 Philadelphia, PA San Francisco Miles for Melanoma 5k November 12 San Francisco Zoo, San Francisco, CA
New York Gala October 26 New York City, NY
Eyes on a Cure Meeting May 2 - 5, 2024 Boston, MA
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