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What is neurofibromatosis? Why aren't there better treatment options? What will it mean for our child? Having a child diagnosed with a rare and serious condition, such as neurofibromatosis (NF), is challenging, to say the least. Learning more about NF and being an active member of the NF community gives me hope that effective treatments and an ultimate cure will be found for my child and the many thousands who live with NF. I learned about the Department of Defense's Neurofibromatosis Research Program (NFRP) through Neurofibromatosis Northeast since promoting research, awareness, and advocacy is at the heart of what NF Northeast does. I have volunteered for NF Northeast for several years to raise funds for research and raise awareness of NF. I am currently an officer on the NF Northeast board of directors and chair committees, including the Medical and Scientific Committee and Steps2Cure NF.
I have twice had the privilege of being a consumer reviewer for the NFRP. It was quite a learning experience and I am impressed by how the program is organized and the commitment of the Army's CDMRP staff. The interaction between the scientists/clinicians and consumer reviewers is an important aspect of the program. The scientists/clinicians want to hear consumer input and the perspective of the NF community regarding the research applications being reviewed, which makes this program effective and balanced. The experience of being a consumer reviewer has been beneficial as I have advocated for the continued funding of the CDMRP to Congress during annual trips Washington, D.C.with the NF Coalition: I can give first-hand knowledge of the NFRP and describe the positive impact on the NF community with the facilitation of NF research. I can also communicate that there are research proposals that are good and sound, but that are not funded because of limitations in the amount of research funding available. My clinical research background as a nurse and subsequent work at pharmaceutical/biotech companies have given me a realistic view and appreciation of the clinical research process and, although there are many challenges involved in NF research, there is also great hope that the current research efforts will change tomorrow's treatment options for people with NF, including my son. I want to thank the other consumer and scientific panelists for their commitment and the Department of Defense for this invaluable program!
Last updated Thursday, September 17, 2020