Ocular Melanoma Patient Resources
The MRF’s CURE OM initiative provides ocular melanoma patients with the most up-to-date resources available. Below are a list of resources specific to ocular melanoma. You might also like to view our CURE OM Brochure or past issues of Eye on OM, the CURE OM e-newsletter. Want to educate others on ocular melanoma? View the Ocular Melanoma Fact Sheet. Take a moment to learn more about the variety of OM resources below!
Events & Recordings
Eyes on a Cure: Patient & Caregiver Global Symposium
The 2020 Eyes on a Cure: Patient & Caregiver Global Symposium was held VIRTUALLY on Nov. 19-21, 2020!
The 2019 Eyes on a Cure: Patient & Caregiver Symposium was held on April 5-7, 2019 in Raleigh, NC. More than 130 OM patients, survivors, caregivers and advocates gathered to learn the latest in OM research and treatment from internationally renowned researchers, physicians and ocular melanoma experts. In addition to the scientific agenda, a full schedule of wellness activities was also offered.
Past ocular melanoma educational events can be found below:
- View recordings and slides from the 2019 Patient & Caregiver Symposium
- View recordings and slides from the 2018 Patient & Caregiver Symposium
- View recordings and slides from the 2017 Patient & Caregiver Symposium
Find an OM Specialist
Use the Treatment Center Finder to explore ocular melanoma treatment centers. Please note, this is not a doctor recommendation list, simply a list of OM specialists to get you started. The Eye Cancer Network also provides a list of specialists in the US and more than 50 countries around the world.
Clinical Trial Finder
The MRF’s Clinical Trial Finder will help you understand which emerging ocular melanoma treatments may be an option for you. Clinical trials offer OM patients the opportunity to receive care that may not yet be the standard.
View an Ocular Melanoma Webinar
Questions to Ask Your Doctor
Ask the MRF Nurse!
Have a question about melanoma? Having trouble understanding your pathology report? Wondering how to better manage side effects?
Introducing the MRF’s Nurse, Amanda Livengood! Ms. Livengood earned a BS in nursing from Drexel University in Philadelphia, PA and for the past 7 years, has been working as a clinical research nurse in the melanoma center at Dana-Farber Cancer Institute in Boston, MA. In this role, Ms. Livengood monitors patients enrolled in melanoma clinical trials. In her spare time, she tries her best to keep up with her two young daughters and enjoys music and documentaries.
Ms. Livengood can be reached at [email protected].
CURE OM Support Groups
CURE OM has partnered with Thomas Jefferson University to offer ocular melanoma support groups. In addition, monthly in-person support group offered by Colorado Retina, University of Denver Center for Oncology Psychology Excellence (COPE). For information on how to join, please contact Lauren Johnston, Rare Subtypes Program Officer, at [email protected].
Ocular Melanoma and Advocacy
The Melanoma Research Foundation (MRF) Advocacy Program is a platform for those affected by melanoma to share their voice and transform melanoma care. Whether you are a patient, caregiver, survivor, healthcare professional or partner, YOU play a critical role in the advancement of better outcomes for the over one million Americans living with melanoma and their loved ones. Together We Can!
- Ocular Melanoma Patient-Led FDA Listening Session – On January 27, 2020, the Melanoma Research Foundation’s (MRF) CURE OM initiative led by Senior Advocacy Officer Cassie Beisel conducted a first of its kind Patient-Led Ocular Melanoma Listening Session at the U.S. Food and Drug Administration (FDA). Patients, caregivers and medical professionals met with eighteen FDA leaders to share their stories and discuss the needs of the community. The stories told focused on the lack of standard of care, mis-diagnosis, the need for single arm clinical trials, the financial toxicity of the disease, and toll it takes on both patients and caregivers that are part of this orphaned disease. Read more here…
Ocular Melanoma Resources, Organizations & Blogs
It’s easy to forget that you are not alone. Below are blogs that share supportive perspectives and insight.
- EyeCare America – a program through the American Academy of Ophthalmology that offers free medical eye exams for those who qualify.
- EyeMelanoma.org – highlights educational and support resources available online for patients and their families.
- FightCancerWithMe – a blog by Tom Loverro, diagnosed with choroidal melanoma.
- LostEye – written by Jay Adkisson, who lost his eye to choroidal melanoma in 2000. LostEye includes support and links to resources for people who have lost an eye to cancer or other injury.
- OcuMel UK – a registered England charity supporting those affected by ocular melanoma.
- The Eyes Have It – a blog by Dove Karn, diagnosed with ocular melanoma.
- Read CURE OM director Sara Selig’s blog post on StandUp2Cancer on love, life and caring for her husband Gregg, who lost his battle with ocular melanoma in January 2012.
- DecisionDx-PRAME Summary
Know of other blogs or resources you think others would find useful? Let us know – email us at [email protected].