In episode 58 of The Charity Charge Show, Stephen interviews Lauren Isbell, CEO of Nevus Outreach, whose mission is dedicated to bringing awareness, providing support, and finding cures for people affected by congenital melanocytic nevi and related disorders.
Lauren Isbell became part of the Nevus Family when her youngest daughter, Maylee Joy, was born with a facial congenital melanocytic nevus in 2017. After attending her first conference in 2018, she served as a volunteer on the Fundraising Committee prior to being selected as the new CEO of Nevus Outreach in 2019. She holds a Bachelor’s degree in Social Work from Arkansas State University and completed both a three-year training program, the Community Development Institute, at the University of Central Arkansas, and Non-Profit Management Executive Education Progam with Northwestern University in Chicago. She’s worked at a half dozen non-profits and has had a myriad of opportunities to develop skills as a problem-solver and innovator while helping direct campaigns that shifted organizational culture.
Here is a snippet from Lauren Isbell on the podcast:
“We were so fortunate to be able to support the UK charity called Caring Matters Now, and to bring those books to the US. We are really doing what we can to drive awareness on the research end. We have a lot of research partners who are doing everything such as thinking about itching and lack of sweat glands. That is a common problem with people with Niva, especially when it covers a large percentage of their body– that can be quite problematic. We have some research going on related to even more cases such as neurocutaneous melanoma. This happens when the cells that make up the naevi are also externally present on a patient’s brain or spinal cord. If that develops into melanoma, unfortunately right now, we don’t have any cures for that. We have some treatments that we’ve worked on but, it is ultimately fatal at this point. That’s a really hard thing to even say out loud, even to grapple with. Even just this calendar year, we’ve lost a handful too many, one is too many, constituents to neurocutaneous melanoma or NCM.
We have a fantastic researcher at the University of Pittsburgh who has made it his life’s work to work with NCM and NCM patients. We really try to champion the work that he is doing there and drive the course forward on an advocacy level, advocating for dollars for rare treatments. But when you have a form of cancer that affects such a small number of people, it’s really hard to get research dollars to fund that. But, just because it affects only a few people doesn’t mean that it’s not a worthy cause. We just really feel like it is our responsibility as the larger end of this community to push research forward in any way that we can. We’ve really rallied behind the idea of advocacy.”
Interested in listening to the full episode and hearing more from other nonprofits? Check out more episodes here Charity Charge Show