Setting our eyes on a cure for ocular melanoma CURE OM
Community United for Research and Education of Ocular Melanoma (CURE OM) An initiative of the MRF to accelerate research, find new and effective treatment options and increase awareness, education and support of patients, clinicians and researchers.
Diagnosed with OM?
HERE ARE SOME QUICK TIPS:
Choose a specialist who regularly treats OM. Find a physician and treatment team who have experience treating ocular melanoma to ensure you have the most informed and up-to-date care. For a list of specialists who treat OM, visit cureom.org . Know what you’re up against. Advances in research allow doctors to predict the aggressiveness of an eye tumor. Talk to your specialist about your options, including a biopsy prior to treatment. Be your own advocate. Treatment guidelines currently do not exist for follow-up frequency or type of care once the tumor in the eye has been treated. Being educated on the latest research and treatment options enables you to work with your treatment team to identify the follow-up option that is best for you.
CONNECT WITH THE OM COMMUNITY and access important education and treatment information: Visit CUREOM.org to connect with others and get the latest news related to ocular melanoma.
What is ocular melanoma? Ocular melanoma, or melanoma of the eye, is the most common primary eye cancer in adults and the second most common type of melanoma, with around 2,000 new cases each year in the United States and more than 5,000 new cases globally, with thousands more living with the disease. Ocular melanoma is comprised of two types: conjunctival melanoma and the more common uveal melanoma. Uveal melanoma can occur in any of the three layers of the uvea: the choroid, the ciliary body or the iris. Like other melanomas, OM begins in melanocytes, the cells that produce the pigment melanin. Ocular melanoma is a particularly dangerous form of melanoma and accounts for approximately 5% of all melanoma cases. The disease will spread from the eye to other organs in approximately half of people with ocular melanoma. Currently no known cure for metastatic ocular melanoma exists. However, encouraging advances in research offers new hope to OM patients. TYPES OF UVEAL MELANOMA Choroidal melanoma begins in the layer of blood vessels — the choroid — beneath the retina. It is the most common type of uveal melanoma. Iris melanoma occurs in the front, colored part of the eye. Iris melanomas usually grow slowly and do not typically metastasize, or spread, to other parts of the body outside the eye. Ciliary melanoma occurs in the back part of the eye — in the ciliary body. Melanomas in the ciliary body tend to grow and metastasize to the liver more quickly than iris melanomas.
CURE OM funds critically important research. People battling OM urgently need more treatment options. There is currently only one FDA-approved treatment for metastatic OM, which is only effective in a subset of patients. Research to advance new treatments is critical. Many people with OM choose to enter clinical trials where they’re able to access cutting-edge treatments. Participating in clinical trials contributes to research advancements that benefit the entire OM community. Researchers are learning more about the biology, genetics and natural history of OM, allowing them to explore new and promising treatments. The MRF offers grants to researchers through the CURE OM initiative in order to speed the pace of discovery. Continuous support of research is the only way to achieve the advances patients need. CURE OM sponsors its own patient-driven research initiative called Virtual Information System to Improve Outcomes and Networks (VISION), an IRB-approved natural history study that captures the patient journey. The intent of the research is to centralize and study patient data from around the world. By funding this critical research, the CURE OM initiative is accelerating treatment development to bring new therapies to people with OM. To learn more about CURE OM-funded research, visit cureom.org .
CURE OM puts patients at the center of research through the VISION Platform.
CURE OM advances research, patient support and education. CURE OM-FUNDED RESEARCH. CURE OM funds peer-reviewed and patient-reviewed research grants to accelerate research efforts towards identifying more effective treatments and ultimately a cure for OM. EDUCATION AND SUPPORT. CURE OM offers free symposia, webinars, awareness campaigns, educational materials, and advocacy initiatives and support groups for patients with OM and the people who support them. VISION PLATFORM is an ocular melanoma patient-powered platform that centralizes tools and resources which consist of: • VISION patient-reported Registry • VISION Discussion Forum • VISION Clinical Trials Connector Tool • VISION Patient Documents Repository • VISION Helpful Resources Library Scan to visit
melanoma.org/ visionplatform .
ONLINE SUPPORT GROUPS. The MRF’s CURE OM initiative partners with leading oncology psychology and social work programs to offer virtual support groups to the patients and caregivers in the primary and metastatic ocular melanoma community.
To learn more about each of these initiatives, visit cureom.org .
Your support makes a difference.
MELANOMA RESEARCH FOUNDATION 1420 K Street, NW, 7th Floor Washington, DC 20005 T 202.742.5864 or 1.800.MRF.1290 F 202.347.9678 E cureom@melanoma.org melanoma.org facebook.com/cureom As a survivor for more than a decade (with many more to come!), I have seen major advancement in the field and CURE OM has played a leading role. ” — Anne Marie Montijo, CURE OM Steering Committee Member “ CURE OM has been at the forefront of educating patients, providing support and catalyzing and funding innovative research on ocular melanoma. To date, over $1.5 million dollars has been awarded in peer-reviewed research grants to leading researchers. When patients and researchers asked for a patient registry, CURE OM responded and built the registry with the help of a patient-centered working group. Stay up-to-date on CURE OM’s programs and support resources by signing up for the e-newsletter, Eye on OM. Email cureom@melanoma.org to join. melanoma research. Email events@melanoma.org . • VOLUNTEER! Want to make a big difference while investing only a little bit of your time? Find ways to get involved as a volunteer for the MRF’s CURE OM initiative. Email volunteer@melanoma.org . You can help the MRF support people facing OM and researchers searching for new treatments. CURE OM has several ways to get involved: • DONATE! Help CURE OM make a difference for the 2,000 Americans and more than 5,000 people globally who are diagnosed each year and the thousands more living with this disease by making a tax-deductible donation. Email donate@melanoma.org . • JOIN VISION! Help research by sharing your knowledge and experience with OM in CURE OM’s patient-powered registry at melanoma.org/visionplatform . • ATTEND AN EVENT! Find out about upcoming events near you. Visit melanoma.org/how-to-help/events . • HOST AN EVENT to raise awareness and funds for ocular
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