Neurofibromatosis Network is the leading national organization advocating for federal funding for NF research and the development of local NF organizations through: • Grass roots advocacy programs to promote federal funding for NF research, • Public dissemination of medical and scientific information about NF, • Financial and promotional support of NF researchers, • The publication of educational materials for distribution to those affected by NF, • A national referral database for NF clinical care, • The support of emerging local NF groups, • Growth opportunities for existing NF groups and their facilitation of networking, • Creating awareness of NF and its effects to health care professionals, government authorities and the general public. Neurofibromatosis Network was founded in 1988 by several strong local NF organizations wishing to establish a national NF organization which allowed for autonomy within the individual organizations as well as collaboration on activities that were national in nature.
Jeff Leibow came to Las Vegas as one of the original stars of the Tony Award-Winning musical, JERSEY BOYS, getting rave reviews for his portrayal of Nick Massi, one of the original Four Seasons. Before that, he performed in professional theaters all over the country garnishing award nominations for many of his roles. Using his celebrity, he made giving back to the community a priority, involving himself with every charity event and benefit concert he could fit into his schedule. In 2009, his daughter become his the top priority as did raising awareness for Neurofibromatosis. He and his wife, Melody, founded the annual NF Hope Concert in 2011, which has raised nearly $350,000 for Neurofibromatosis research and advocacy so far. Last year, after more than 7 years and 2,700 performances in JERSEY BOYS, he hung up his costumes to dedicate more of his time to this cause that means so much to him and his family.
For additional information, visit www.nfhope.org/ Twitter: @jeffleibow