Liz Thompson, a resident of East Irondequoit, who has neurofibromatosis type 1, joined 82 other individuals from 23 states to advocate for neurofibromatosis research funding in Washington, D.C., on Feb. 10-11.
Thompson was part of a group representing Neurofibromatosis Northeast, a Burlington, Massachusetts-based nonprofit. Participants gathered from around the country as part of the NF Network Advocacy Program.
Advocates participating in this program have been the voice of the NF community on Capitol Hill for the past 23 years and have helped in generating over $600 million dedicated to NF research.
NF is a genetic disease disorder that causes tumors to grow along the nervous system, including on or below the skin, in internal organs and in the brain and spinal cord. The most common form, NF1, occurs in one out of every 2,500 births. There are two other less common forms: NF2 and Schwannomatosis.
NF is a highly variable disease, and there is no known treatment to stop the growth of the resulting tumors. Since 1996, NF research has been funded through two vehicles: the Congressionally Directed Medical Research Programs and the National Institutes of Health.
Funded research led to the creation of the NF Clinical Trials Consortium, a group of 21 clinical sites throughout the U.S. with an operational center to analyze data. Thompson, along with her fellow advocates, urged her senators and representatives to support NF research funding through the CDMRP and the NIH.
Continued Congressional funding is critical to the clinical trials that may lead to a treatment and cure for NF and related disorders.
Visit and to learn more about the NF Network Advocacy Program.