Local couple visits congressman during Rare Disease Week
Published 1:07 pm Wednesday, March 20, 2019
Nathan and Allison Peck of Americus visited with U.S. Congressman Sanford Bishop during Rare Disease Week on Capitol Hill on Feb. 26. The Pecks lead Cure VCP Disease, Inc. (www.curevcp.org) a rare disease patient advocacy organization headquartered in Americus, and working to drive a cure for VCP disease, of which Nathan is afflicted. The agenda during Rare Disease week included a Georgia delegation meeting with the offices of Senators David Perdue and Johnny Isakson and Representatives Barry Loudermilk (R-GA-11), Tom Graves (R-GA-14) and Sanford Bishop (D-GA-2).
The meeting with Rep. Bishop and his staff went very well. The Pecks encouraged Bishop to join the Rare Disease Caucus, which he accepted. We also discussed maintaining and increasing funding for the NIH and FDA, organizations vital to driving science and drug development to cure rare diseases. There are over 7,000 rare diseases identified, 50 percent of which afflict children. One in 10 Americans have a rare disease — 30 million Americans.
Rare Disease Week on Capitol Hill is driven by Rare Disease Legislative Advocates (RDLA) a division of the Everylife Foundation for Rare Diseases. The week started on Feb. 24 with a rare disease documentary screening entitled “My Turn, the Film.” Feb. 25 was the Legislative Conference that included training on how to make an ask of Congress. Tuesday was meetings with Congress. Wednesday was the Caucus Briefing and Thursday culminated the week with Rare Disease Day at the NIH, where the Pecks exhibited and spoke with representatives from the NIH and other researchers.