PKD FOUNDATION CELEBRATES SUCCESS OF NATIONAL KIDNEY MONTH KICK-OFF EVENT
“PKD CHAMPIONS UNITED ON THE HILL”
Advocates gather in DC to support PKD research funding and other vital policies.
(Washington, DC) March 17, 2008 — Seventy advocates from across the country gathered in Washington, D.C., this month to participate in the first-ever “PKD Champions United on the Hill” event. Their message to Congress is simple, support increased PKD research funding and other policies beneficial to the 600,000 Americans living with PKD.
PKD is one of the most common life-threatening genetic diseases, affecting 600,000 Americans. PKD causes cysts to form throughout the kidneys and eventually, the kidneys fail. Dialysis and transplantation are the only treatment options for kidney failure. There is no cure for PKD.
“It’s extremely important to our efforts to find a treatment and cure for PKD that our advocates come to Washington, D.C., to meet with their elected officials and their staffs,” said Dan Lara, government relations manager for the PKD Foundation. “That one-on-one contact is key to showing our Senators and Representatives that they have constituents affected by this disease.”
Guest speakers on March 3 prepped the advocates for their visits to more than 90 Congressional offices the following day. Dr. Robert Star, Acting Director for the Kidney, Urologic and Hematologic Disease Division of the National Institutes of Health (NIH) discussed how the PKD Foundation and NIH work together with other private partners to advance PKD research. U.S. Representative. Louie Gohmert (R-TX), a member of the House Judiciary Committee discussed his vision of health care reform and the need for advocacy groups to keeping raising awareness to get their policy goals enacted.
The 2009 PKD Champions United on the Hill is set for March 2-3 at the Downtown Four Points Sheraton in Washington. Online registration will open at the National Convention on PKD in Dallas on June 20.
The PKD Foundation, headquartered in Kansas City, MO, leads the fight against polycystic kidney disease (PKD) through research funding, patient education and advocacy. In 2008, the PKD Foundation will fund approximately $4 million in vital PKD research. For more information, visit www.pkdcure.org or call 1-800-PKD-CURE.