Fibrolamellar patient community helps review DOD grants

FCF would like to extend a special thank you to Jenny Carroll, Ben Saksa, and Linda Spink who participated in the 2020 Department of Defense grant review process this fall. Each of these members of our community volunteered to be a consumer advocate for the Congressionally Directed Medical Research Programs’ (CDMRP) Peer Reviewed Cancer Research Program (PRCRP) in the Department of Defense. As consumer reviewers, they, along with with prominent scientists, helped determine how $110 million appropriated by Congress for Fiscal Year 2020 will be spent on cancer research.

Consumer advocates and scientists have worked together in this unique partnership to evaluate the merit of research applications since FY09. COL Sarah B. Goldman, Director of the CDMRP, expressed her appreciation for the consumer advocates’ hard work. “Integrating consumer perspectives into our decision-making process brings energy and focus to our research programs. Patients, caregivers, family members, and advocates help us keep our efforts centered around what is truly important to those impacted. We very much value this critical input from our consumers who help ensure that CDMRP’s work remains critical and relevant,” she said. More information about the CDMRP’s PRCRP is available at

Fibrolamellar community members have served in these PRCRP consumer advocate roles for several years. Partly as a result, since 2015 over $2.1 million has been granted by this program to support fibrolamellar research efforts. Thanks again to our patients and caregivers who have not only brought a critical patient perspective into an important research grant allocation process, but also motivated the DOD to support fibrolamellar!