Consumer Reviewers for the DOD’s NF Research Program, Marissa Shaw and Lindsay Rosenfeld:
Since the Department of Defense’s Congressionally Directed Medical Research Program (CDMRP) for Neurofibromatosis began in 1996, NF Northeast staff as well as NF patients and family members have participated in the evaluation of research applications submitted for funding. Consumer reviewers are full voting members, along with prominent scientists, at meetings to help determine how the money appropriated by Congress for a given fiscal year will be spent on future neurofibromatosis research.
During the current round of application reviews Marissa Shaw of New York sat on the NF2 Panel and Lindsay Rosenfeld of Massachusetts was on the NF1 Panel. Both were nominated by NF Northeast. Consumer reviewers are asked to represent the collective view of neurofibromatosis survivors and patients, family members, and persons at risk for the disease when they prepare comments on the impact of the research on issues such as disease prevention, screening, diagnosis, treatment, and quality of life after treatment.
Consumer advocates and scientists work together in this unique partnership to evaluate the scientific merit of neurofibromatosis research applications.The Consumer Reviewers on each panel are instrumental in helping the scientists understand the patient’s perspective and provided valuable insight into the potential impact of the proposed project. They bring with them a sense of urgency and remind all of the human element involved in medical research.
Scientists applying propose to conduct innovative neurofibromatosis research aimed at the elimination of neurofibromatosis. The NFRP fills important gaps not addressed by other funding agencies by supporting groundbreaking, high-risk, high-gain research while encouraging out-of-the-box thinking.
Along with nominating consumers for the Panel, NF Northeast has been a constant advocate for the funding of this critical research by meeting annually with members of Congress to ensure the continuation of the CDMRP.