Will reinforce push for early detection, living organ donation, and more funding to fight kidney disease
New York, Thursday, March 1, 2018—Nearly 100 advocates from kidney organizations around the country – joined by 10-year-old singing phenom and kidney transplant recipient Angelica Hale – will converge on Capitol Hill to meet with their lawmakers to inspire action for kidney disease at the 5th Annual Kidney Patient Summit on March 5th and 6th. The event, led by the National Kidney Foundation (NKF) and carrying the mantra “My Kidneys, My Life” brings together members of the NKF Kidney Advocacy Committee and advocates from Alport Syndrome Foundation, American Association of Kidney Patients, PKD Foundation, and NephCure Kidney International.
Advocates representing nearly all 50 states – learn who they are - will share their stories and urge Members of Congress to support H.R. 3867, a pilot program which seeks to improve early detection, care and outcomes for people with chronic kidney disease (CKD); support H.R. 1270, the Living Donor Protection Act, which would prohibit discrimination in life, disability or long-term care insurance for living organ donors and add living donation to the Family Medical Leave Act; and support funding for CKD programs overseen by the Centers for Disease Control and Prevention, National Institute of Diabetes and Digestive and Kidney Diseases, and Health Resources and Services Administration Division of Transplantation and Bureau of Primary Care.
NKF welcomes to this year’s Summit its newest and youngest kidney advocate, Angelica Hale, the first-ever NKF Kid Ambassador, who, with her parents, supports NKF’s legislative priorities. At age 4, Angelica’s kidneys failed. Her mother, Eva Hale, donated one of her own kidneys to her daughter to save her life. Today, both mother and daughter are healthy.
“My mom is my superhero. She brought me and my dreams of singing back to life,” said Angelica, best known for making it to runner-up on television’s America’s Got Talent. “I’m the new NKF Kid Ambassador, so I’m proud to go to Washington D.C.! I just want to help others fight kidney disease and reach their dreams too.”
On Tuesday, March 6th – Day 2 of the Kidney Patient Summit – Angelica will be available for media interviews from 8 a.m. to 11 a.m. (please arrange in advance with NKF). That afternoon she will be featured in a 15-minute Facebook Live Q &A session with Members of Congress. At 6 p.m., the Summit’s annual Congressional Awards Reception, chaired by Wisconsin Governor Tommy Thompson, will honor selected Members of Congress for their exemplary commitment to fighting kidney disease; Congressman G.K. Butterfield, Congressman George Holding, Congressman Markwayne Mullin and Congresswoman Linda Sanchez. The reception will feature a special, congratulatory song performance by Angelica, who also will be awarded. Her performance will be captured via a second Facebook Live.
“Kids and adults look up to Angelica,” said Kevin Longino, CEO of the National Kidney Foundation and a kidney transplant recipient. “I am also inspired by her and the stories of all of the advocates attending this year’s Kidney Patient Summit. The shortage for transplanted kidneys continues to grow, and 12 people die every day waiting. This is why pressing for the passage of legislative priorities that would improve the lives of millions of Americans is so important.”
The Kidney Patient Summit is focused on individuals who have kidney disease, dialysis patients, living donors, family members and caregivers, all united by the affirmation and hashtag “My Kidneys, My Life” (#MyKidneysMyLife) to underscore the direct relationship between having at least one healthy kidney and living at all. Advocates will emphasize this message during personal meetings with their respective lawmakers on Tuesday between 9:30 a.m. and Noon. The Summit opens Monday, March 5th at Holiday Inn Washington-Capitol with a 1:30 p.m. training meeting of Kidney Advocacy Committee members, their families, and care partners, who will use their collective experiences related to kidney disease to champion NKF’s legislative priorities.
Whether traveling from far away or locally; or by air, rails, bus or car, the Kidney Patient Summit has become a must-attend event – especially for kidney patients despite constant health challenges, medical appointments, and reliance on dialysis. Event organizers work personally with patients well in advance to help accommodate any special needs they will have while staying in Washington, D.C. This includes setting up on-site or local dialysis treatments, shipping dialysis supplies to the hotel, providing refrigerators in rooms for medications, allowing wheelchair or scooter access, and addressing dietary requests or restrictions.
Kidney Disease Facts
30 million American adults are estimated to have chronic kidney disease—and most aren’t aware of it. 1 in 3 American adults are at risk for chronic kidney disease. Risk factors for kidney disease include diabetes, high blood pressure, heart disease, obesity and family history of kidney failure. People of African American, Hispanic, Native American, Asian or Pacific Islander descent are at increased risk for developing the disease. African Americans are 3 times more likely than Whites, and Hispanics are nearly 1.5 times more likely than non-Hispanics to develop end-stage renal disease (kidney failure).
The National Kidney Foundation (NKF) is the largest, most comprehensive and longstanding organization dedicated to the awareness, prevention and treatment of kidney disease. For more information about NKF visit www.kidney.org.