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.
In-Person & Virtual Events
The MRF offers free ocular melanoma educational events on a regular basis. These events are dedicated to melanoma patients and the people that support them. Patients, caregivers, friends, loved ones and healthcare providers are welcome to participate. Take a look at our past ocular melanoma educational events here:
- View recordings and the agenda from the 2015 Patient & Caregiver Symposium
- View videos from the 2013 Eyes on a Cure Patient Symposium
- Watch ocular melanoma educational webinars
Physician Lists & Questions to Ask Your Doctor
Below are some resources for both ocular melanoma patients who have primary disease and for those with systemic disease. We make every effort to keep this information as accurate as possible. For additions or corrections, please send an email to firstname.lastname@example.org.
- Do you have primary disease? If so, please view our Ocular Melanoma Specialist (Primary) List or some Questions to Ask Your Doctor - Primary.
- Do you have systemic (metastatic) disease? If so, please view our Ocular Melanoma Specialist (Systemic) List or some Questions to Ask Your Doctor - Systemic.
You might also be interested in the Ocular Melanoma Fact Sheet.
Ask the MRF Nurse
Do you have a specific, more medically based question? If so, you can submit your question to the MRF nurse by emailing email@example.com. You can expect a personalized answer from our experienced nurse within 72 hours. Learn more about the MRF's nurse here!
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. You can access the MRF's Clinical Trial Finder online or by phone at 1-800-517-2218.
Connect with Others
CURE OM Forum
The CURE OM Forum is an online bulletin board where ocular melanoma patients, caregivers and their loved ones can talk with other OM patients and caregivers from around the world. Visit the CURE OM Forum to read posts or sign up to create your own posts!
MRF Phone Buddy Program
The MRF Phone Buddy program provides newly diagnosed ocular melanoma patients with non-professional, emotional support from someone who has "been there". For more information on becoming involved, or if you would like to request a Phone Buddy for yourself, please contact Mary Antonucci, National Director of Volunteer Services at (202) 347-9675 or firstname.lastname@example.org.
MRF Toll-Free Helpline
The MRF has a FREE telephone helpline to assist melanoma patients and their loved ones. The helpline is staffed by professional oncology social workers who have received specialized training in both melanoma and ocular melanoma. The helpline provides counseling and practical help to those in need.
To reach the helpline, please call 1-877-MRF-6460 (1-877-673-6460) Monday through Thursday, from 9 a.m. – 7 p.m. and Friday, 9 a.m. – 5 p.m. Eastern Time
Ocular Melanoma Blogs
It's easy to forget that you are not alone. Below are blogs that share supportive perspectives and insight.
- 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.
- 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.
- EyeMelanoma.org - highlights educational and support resources available online for patients and their families.
Know of other blogs or resources you think others would find useful? Let us know - email us at email@example.com.