A Focus on Rare Melanoma Subtypes

Guest blog post from Mark Weinzierl, MRF board member and ocular melanoma survivor:

My name is Mark Weinzierl and I am currently a board member of the Melanoma Research Foundation (MRF), the largest independent organization devoted to melanoma. My interest and commitment to the MRF stems from my diagnosis of ocular melanoma back in 2006. The MRF is actively involved in the research, education and advocacy of all forms of melanoma including its many rare subtypes, of which ocular melanoma is one. When most people think of melanoma, they think of cutaneous melanoma or “skin cancer.” In 2021, there is expected to be over 200,000 new cases of melanoma diagnosed in the U.S., with a majority of those cases being cutaneous, but melanoma encompasses a number of rare subtypes which affect everyday people just like me.

Ocular melanoma, the melanoma version I was diagnosed with, is considered a rare cancer type with only 2,000 new cases diagnosed in the U.S every year. Rare cancers are defined by the National Cancer Institute as a cancer that occurs in fewer than 15 out of 100,000 patients (ocular melanoma occurs in 5-6 people per 1,000,000, very rare even by the definition of Rare Cancer Types). Rare cancers are more difficult to diagnose and treat and because there are fewer cases, they usually do not generate a high level of research and research dollars.

That is one of the reasons I was attracted to the MRF and the work they are doing. The MRF has active programs for ocular melanoma, mucosal melanoma and pediatric melanoma. In fact, I was one of the original members of the Ocular Melanoma Advisory Board within the MRF, now referred to as CURE OM. The founder of CURE OM was instrumental in bringing together researchers across the country to discuss their experience with ocular melanoma, the treatments and results. CURE OM established a number of programs to help educate other patients and set up support to provide pertinent information. This program has gone a long way in furthering research and education of this rare cancer.

February 28 is Rare Disease Day and the MRF is highlighting patient stories of those with rare subtypes such as mine as well as mucosal and pediatric melanoma. In fact, the MRF has launched their newest awareness campaign, #OutOfTheShadows, which is focused on mucosal melanoma. The MRF has been a great resource to those with melanoma, including those with rare subtypes, bringing attention, research dollars and advocacy for all with melanoma. I have been fortunate to have been able to help and be involved with this first-class organization.

The Melanoma Research Foundation is committed to increasing awareness, advancing research and improving outcomes for the entire melanoma community. This work is only possible because of your support; please consider a tax-deductible gift today:

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