Battling melanoma is tough. Battling a rare and often overlooked melanoma can make the battle even tougher. That’s why the Melanoma Research Foundation(MRF) is launching an initiative to give greater voice to patients fighting melanoma that affects the eye.
Ocular melanoma develops in the eye and is the most common eye cancer in adults and the second most common type of melanoma. About 2,000 Americans are diagnosed with the disease each year. In about half of all OM cases, the disease will spread to other parts of the body. When this occurs, it is invariably fatal. The new MRF initiative ? CURE OM? will advance research, provide educational resources and facilitate support for people affected by ocular melanoma (OM), the most common form of eye cancer in adults.
About 2,000 adults are diagnosed with OM in the United States each year. In about half of all OM patients, the disease will spread to other parts of the body, which is deadly in most cases. Others face loss of vision or an eye. “Given how rare OM is, many people never encounter anyone else facing this diagnosis,” said Timothy J. Turnham, the executive director of the MRF. “The MRF’s CURE OM initiative is designed to connect patients and caregivers globally to combat this sense of isolation. By spotlighting the issues facing OM patients and their families, we can make progress toward finding needed treatments.”
Sara Selig, MD,is leading MRF’s new CURE OM initiative. She is a resident in Global Health Equity and Internal Medicine at Brigham and Women’s Hospital and an experienced advocate whose husband has OM. A steering committee of patients and relatives will help build and direct the initiative. “I am excited to be teaming up with the MRF, which has an impressive track record of reaching a broad spectrum of melanoma patients, working collaboratively with stakeholders and contributing to the melanoma community in innovative ways,” Selig said. “Together we can generate much-needed awareness of OM and support crucial research needed to save lives.”
As with other melanoma patients, the greatest unmet need of the OM community is treatment options. CURE OM will develop funding for medical research to identify effective treatments for ocular melanoma. The initiative has established a scientific steering committee comprised of leading researchers to guide its work. Dr. Keith Flaherty, an oncologist at Massachusetts General Hospital, and Dr. William Harbour, Paul A. Cibis Distinguished Professor of Ophthalmology at Washington University in St. Louis, are chairing the committee. The committee will determine research priorities and award grants to support important steps to finding new treatments. The approach is interdisciplinary and will support researchers from around the world. In addition, research meetings, designed to share knowledge and areas of promise among the brightest in the field, will be held twice annually.
The OM community has seen new momentum recently with the discovery of distinct genetic mutations that may lead to new treatment options. Researchers have uncovered that two related mutations now account for approximately 80% of OM cases. “This is truly an exciting time in OM research. A pathway has been identified that may unlock a cure for almost all OM patients. Furthermore, understanding how to successfully treat OM may have a ripple effect in helping us understand other cancers. We must put forth the resources needed to make sure that promise is not left untapped,” Selig said.
Another key component of the CURE OM initiative is providing support services and information to people who are diagnosed with ocular melanoma. The MRF’s patient helpline has always been staffed by professional oncology social workers who are specially trained to offer counseling and practical help to patients battling melanoma. They have received additional training to ensure they can assist those affected by OM. Beginning in 2012, CURE OM will hold patient meetings where the community can gather to connect and hear from leading researchers in the field.
Patients and caregivers also can ask questions and get advice from the MRF’s online community, the Melanoma Patients Information Page. The largest online community for melanoma patientswill have a forum designated specifically for conversations about OM.
“With the resources of the OM initiative, we can unite the community in the fight against this disease by combating the isolation many OM patients feel, fueling more innovative research and advocating for the needs of patients,” Turnham noted.