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Andrés Lessing was diagnosed with neurofibromatosis type 1 (NF1) more than 33 years ago, before the gene responsible for the disease had been identified. Although his illness has been mild for most of his life, 6 years ago he received a more threatening diagnosis; a malignant peripheral nerve sheath tumor had been discovered. Four years have passed since his last recurrence.
Andrés has been active helping people with Neurofibromatosis since the late '90s. He became involved with Neurofibromatosis Northeast, with the initial development of their website and serving as one of the organization's first trustees. Along with his father, he helped organize a fundraising event - Bike Ride for NF, in Cape Cod - which not only raised money for Neurofibromatosis Northeast, but also provided a framework for bringing people affected by NF together.
Neurofibromatosis, Northeast nominated Andrés to serve as an NFRP consumer peer reviewer. He was invited to join the review panel and after the first meeting described the review experience as "amazing - to be part of the peer review process in selecting the best research to pursue. It was very rewarding to be at the same table as researchers and clinicians, and others affected by NF." He has remarked that consumers and scientists alike were encouraged to express their opinions and ask questions. He left the meeting convinced not only that his concerns had been heard but that the work the panel had accomplished would ensure that the limited funds available would go to the best projects.
An avid bicyclist and father of two children, Andrés observes, "Every year progress is made. I know this because I get daily updates from government-funded research and 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 this consumer's fervent hope is that the government continues to recognize the urgency to fund NF research, which, he points out, has not only led to increased knowledge of NF but other diseases as well, including many forms of cancer.
Last updated Wednesday January 27 2016