Frank D. Buono, PhD, Associate Research Scientist in Psychiatry, will lobby members of Congress on behalf of several advocacy groups in Washington, D.C. in February 2020 to increase funding for the rare genetic disease Neurofibromatosis (NF).
Buono was nominated as a scientific delegate to represent the Neurofibromatosis Network, a rare disease-specific patient advocacy group that supports people and families affected by neurofibromatosis. The network also supports disease research, and its Neurofibromatosis Network Advocacy Program works to secure federal funding for neurofibromatosis research.
Buono and other advocates will meet with U.S. Senators and House members during their trip, scheduled for Feb. 9-12, 2020, to urge them to support neurofibromatosis research funding. He and a colleague will also meet with the director of the Congressional Directed Medical Research Program (CDMRP) which appoints and funds research for a variety of diseases, including neurofibromatosis, chronic pain management, and autism.
Neurofibromatosis is a genetic disorder that causes tumors to form on nerve tissue. There is no cure and there are limited treatment options for individuals with this disease.
Advocates have been successful in lobbying for research money; since 1996, over $320 million has gone directly into disease research through their efforts. The total is over $600 million when combined with funding from the National Institutes of Health (NIH) and Neurofibromatosis Research Program managed through the CDMRP.
The advocacy trip will begin with a kickoff dinner, where a representative from NIH will present research work being done by the organization. Meetings with members of Congress will follow and follow up work will take place after the trip until funding is appropriated.
Buono has been advocating for this disease for over 15 years and is directly involved in treating those with Neurofibromatosis. Contact him at Frank.buono@yale.edu if you are interested in learning more.