Schwannomatosis is not a word that is on most people’s radar. However, for Chad Leathers, the disease described by this word has profoundly changed his life. His youngest brother, Drew, suffered with Schwannomatosis, a rare form of neurofibromatosis (NF), for nearly 15 years before losing his battle. For Chad, there was the feeling that not enough was being done to combat NF. So he closed the doors to his small business, completely changed his career path, and moved to New York City to fund-raise full time for the Children’s Tumor Foundation (CTF).

Chad is now the Founder and Executive Director of Cupid Charities, as well as a CTF board member. Cupid Charities started the Cupid’s Undie Run as a fundraising platform for specific research efforts, and they have provided the CTF with nearly $8 million in the last 6 years. When he looks back over the last 10 years, Chad says that tremendous strides have been made, but he believes that there is still a monumental hill to climb in fighting NF. “Persistence is the only way to the top, there are no shortcuts,” he says.

Chad heard of the Neurofibromatosis Research Program (NFRP) early during his fundraising career and recognized it as a tremendous funding source that is important to the success of finding treatments for NF. He was pleased to learn that it is managed by the Department of Defense and believes that its methodology and consistency provides a great system for funding management and accountability. While serving as a Consumer Reviewer during NFRP Peer Review, he was astounded at the complexity of the proposals that were submitted, but equally astonished at the elegance and smoothness of the management of the program. He feels that the scientific community behind NF research and the NFRP experience is a stellar representation of the persistence needed to succeed in treating NF.

Chad considers his consumer advocate role as vital to the success of the NFRP. He served as a team member in the review process to assist in addressing both endpoint applications and prioritizing patient needs. While the experience shed light on the vastness of the research landscape and the incredible knowledge and intelligence within the scientific community, he stated that there were numerous times when his input provided a new insight that may have otherwise been missed, stressing the importance of the consumer advocate voice. To those in the consumer advocate community, he would highly recommend serving on a review panel with the NFRP.