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When Lindsay Rosenfeld started dating the man who is now her husband, Andrés Lessing, she had no idea what neurofibromatosis (NF) was; however, for almost a decade, it has affected almost every aspect of her life, including how the couple would plan their family. They were 4 months into their relationship when he told Lindsay that he has NF. Four months after that, he underwent his first NF-related surgery to extract what they thought was a nonmalignant tumor. He was subsequently diagnosed with a Stage 3 malignant peripheral nerve sheath tumor (MPNST) with rhabdomyosarcomatous elements. In this first occurrence, he required major surgery, radiation, and chemotherapy. With the two subsequent recurrences, he required surgery and brachytherapy, then "just" surgery. Not long afterward, two young friends of the couple in the Neurofibromatosis Northeast (NF NE) community were diagnosed with MPNSTs. Both died shortly thereafter.
Lindsay became involved with the advocacy organization NF NE through her husband shortly after they met, attending the annual Table for Ten fundraiser, helping to organize and raise funds via the Friends for NF bike ride that her husband helped to start, and attending symposia to learn more about the disease herself. In the years following, she has supported NF NE's fundraising and awareness efforts, but has primarily served as a resource for other young couples with NF, especially in navigating the waters of starting a family.
Lindsay first learned of the Neurofibromatosis Research Program (NFRP) at CDMRP through NF NE and her husband, who has also served as a consumer reviewer and encouraged her to do it, as well. She was impressed with the importance put on consumer involvement at every level of research and found the process well-organized. She found that everyone involved in the review process, from the organizers to the scientific review officers to the panel members, was diligent, thorough, and committed to their role, and saw first-hand NFRP's part in decreasing the clinical impact of NF.
When not participating in advocacy or reviewing grant proposals, Lindsay is active in research, teaching, and mentorship as a social epidemiologist focusing on child equity and policy, specifically concerning social determinants of health and racial/ethnic health inequities. Those mentored by her include undergraduate and graduate students, in particular, those pursuing research projects. In fact, as a social epidemiologist, grant review and scientific critique are a daily part of her work. The NFRP has created - and benefitted from - the opportunity for Lindsay to bring her consumer and scientist perspectives together in this work.
Outside of work, Lindsay enjoys being with her family. She loves seeing the world through the eyes of her four-year-old twins - especially the wonder and excitement. In her rare down moments (or while commuting), she enjoys reading or listening to audiobooks, catching up with friends, watching films, and being outdoors. When asked if there was anything that she would like to share with the consumer community, Lindsay replied, "Being part of the consumer advocate community is a powerful service opportunity. Consumer perspective is VITAL to research pursuits that have clinical and policy impact for those most affected (and to be affected) by NF. Diversity of opinions and experiences is essential."
Last updated Friday, May 20, 2016