On February 8-10, 2015 John, Linda, Erin, and Leah Manth were joined by Anne and Emily Patterson and Emily Kern while they traveled to Washington, DC as part of the Neurofibromatosis (NF) Coalition. They were joined by families affected by NF from across the country to advocate for continuation of federal funding for NF research. This year they requested to maintain the current funding at $15 million for FY 2016. The group from NY had 21 scheduled meetings and conducted 8 walk-ins, thus having contacted every NY Congressman and both Senators.
After such a successful year of fundraising and sponsoring two private research studies, Run4Leah/CureNF was able to take a small portion of their money and contribute it towards the sponsorship of two new families from states that have not had previous representation with the NF Coalition. Melanie Leach from Florida and Chris Holt from Ohio joined the Run4Leah/CuerNF advocates in DC. John Manth was able to provide support and mentoring to Chris for 14 scheduled meetings and 5 walk-ins, including one meeting in Speaker of The House, John Boehner’s office, thus allowing Chris to independently conduct his meetings next year when he returns. Melanie was able to meet with many offices of Florida’s 27 Congressman and 2 Senators, while dropping off information in others, under the guidance of Kim Bischoff and others with NFNetwork. Melanie too is motivated to return next year.
While a busy two days, it is the most exhilarating feeling to be part of such a wonderful team of people, who are all motivated to support research to enhance our understanding and thus find better treatment options for NF. It’s also a great experience for everyone involved, seeing how our government works on a daily basis.