Lindsay Rosenfeld and Andrés Lessing are facing NF’s biggest challenges head-on!
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 four months into their relationship when Andrés told Lindsay that he has NF type 1. 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 (a triton tumor, rare even among sarcomas).
Andrés Lessing was 9 months old when he was diagnosed with NF1. His NF was the result of a spontaneous mutation and for most of his life seemed to be a rather mild case. He had scoliosis and some fine motor control issues that affected his handwriting early on, but he did well in his undergraduate studies at Brandeis University and went on to receive his MBA from Boston College.
Then came the shocking and threatening diagnosis of MPNST. In the first occurrence, he required major surgery, radiation, and chemotherapy. With the two subsequent recurrences, he required surgery and brachytherapy, and then “just” surgery. Seven years have passed since his last recurrence in July 2009, just after he and Lindsay were married.
Andrés and his extended family have been active within our community for many years, and one of his most critical contribution to NFNE was to develop our first website. Along with his father, Miguel, he also helped organize Friends Ride for NF, a bike ride on Cape Cod – which not only raised money and awareness for neurofibromatosis, but also provided the framework for the hugely successful Coast to the Cure Ride for NF.
Lindsay became involved with NFNE shortly after she met Andrés by attending symposiums to learn more about NF, supporting the annual Table for Ten fundraiser, and helping to organize the bike ride. In the years following, she has primarily served as a resource for other young couples with NF, especially in navigating the waters of starting a family.
From the day that Andrés told Lindsay that he has NF, they agreed that their choices for starting a family would be driven by the 50% chance that they could pass the NF gene on to a child. Adoption and fostering were options they were open to, but first they opted to try In Vitro Fertilization with Preimplantation Genetic Diagnosis (IVF/PGD[LR1] ). The multi-step process was challenging and ultimately joyful; Lindsay and Andrés are now the proud parents of boy/girl twins who do not have NF.
Recognizing the critical importance of federally funded NF research, Lindsay and Andrés both volunteered to be Consumer Reviewers for the Neurofibromatosis Research Program (NFRP) which is part of the Congressionally Directed Medical Research Program (CDMRP), and NFNE was proud to nominate them. Andrés served on the panel three years ago and Lindsay participated in 2015. Lindsay, a public health scientist and lecturer, was impressed with the importance put on consumer involvement at every level and found the process well-organized, diligent and thorough. She saw first-hand NFRP’s part in decreasing the clinical impact of NF.
Andrés observes, “Every year progress is made. I know this because I get daily updates from government-funded research and I am able to participate in research studies myself. Knowing where we were 30 years ago, where we were 10 years ago, and where we are now, I know that we are headed in the right direction.”
The need to continue research is critical and they both fervently hope that the government continues to recognize the urgency of funding NF research, which, as Andrés points out, has not only led to increased knowledge of NF but other diseases as well, including many forms of cancer.