I had coffee recently with a woman who has a family member with pediatric melanoma. “No one is doing anything about this,” she told me. No one has built a website for this group, no Facebook page exists for exchange of ideas and support, and no single source of information on this issue is available online. She spends hours every week talking with others like her, trying to answer their questions and offer some support and guidance. Her ask was simple—have the MRF help meet this need.
As I left the meeting, I recalled another conversation. Just over two years ago I started talking with people affected by different rare form of melanoma—melanoma of the eye, or ocular melanoma
(OM). Little research was being done in this area, and patients struggled to find a place for support and information. Sound familiar?
In response to this need we launched the MRF’s CURE OM
initiative, a program specifically to address the needs of the OM community. Now, two years later, we are preparing to hold our third patient/caregiver meeting, we have convened four scientific meetings, and the MRF—thanks to the generosity of several donors—has committed $800,000 in research funding for OM. On top of that, at least two clinical trials trace their roots to the CURE OM effort.
Entrepreneurs tell us that healthy businesses are built by remaining single-minded and avoiding distraction. I once met with a Stage IV melanoma patient who is a venture capitalist. The MRF was (and continues to be) on a strong growth curve and I wanted to pick his brain about how to ensure we continue to grow. His advice was simple: focus! As he listened to the range of programs the MRF offers—prevention messages, patient support and education, clinical trials, peer-reviewed grant funding—he expressed concern that we were doing too much.
I understand the price of distraction. If we try to meet every need we run the risk of stretching our resources too thin and will end up doing nothing well. Still, I can’t imagine anyone would say CURE OM has not been a major success in pushing forward the OM field. A “distraction,” yes, but in the most wonderful, positive way.
On a routine basis we are presented with unmet needs in the melanoma community. People without the BRAF mutation are not eligible to receive half of the new drugs approved in the last 15 years. Patients with mucosal or acral melanoma have little access to clinical trials, and the situation is even worse for people with brain metastases. All this and more leads the MRF to explore questions like: Should we start a program for the mucosal and acral melanoma communities? Should we push for better options for patients who are now "cancer free"? Create a meeting for long term melanoma survivors? Do more work on primary prevention?
Simplify. Focus. Avoid distraction. This is sound advice, but ignores the fact that people aren’t widgets and patients are not intellectual property. We can’t lose sight of the fact that we exist to serve patients—each one of them someone’s parent, or sibling or child. We must balance the lessons of entrepreneurs with the urgency of our mission. This is a hard balance to strike but something we must consider each and every day.
Written by the MRF's Executive Director, Tim Turnham