Advocate from Florida Will Converge on Washington for Kidney Patient Summit

  • Andy
  • 01 Mar 2019
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Orlando Florida, February 22nd, 2019Melissa Tuff from Cape Coral, Florida will join other advocates from across the country to push for early detection, living organ donation, and more funding to fight kidney disease at the 6th Annual Kidney Patient Summit in Washington, D.C., on March 4th and 5th. She is joined by 11-year-old singing phenom and kidney transplant recipient Angelica Hale – will serve as representatives of the National Kidney Foundation (NKF) on Capitol Hill as they meet with lawmakers to inspire action for kidney disease. The event, led by the NKF and carrying the mantra “My Kidneys, My Life,brings together members of the NKF Kidney Advocacy Committee and advocates from the Alport Syndrome Foundation, American Association of Kidney Patients, and the PKD Foundation.

Advocates representing nearly all 50 states – learn who they are – will share their stories and urge Members of Congress to support public policy priorities which advance CKD prevention, early detection, treatment, research, and access to transplants, including living organ donation. 

“We are proud to send our dedicated, volunteer advocate to the nation’s capital to stand up for all people with kidney disease by speaking directly to our elected officials,” said Savanna Lanza, Executive Director of NKF Serving Florida. “There’s no substitute for a patient or organ donor making the case to lawmakers in person about why kidneys are vital to sustaining health and demonstrating why their help matters.”

Angelica Hale, the first-ever NKF Kid Ambassador, and her parents are returning to the Summit in continued support of 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.

“I’m so proud to go back to Washington D.C., to bring attention to kidney disease as NKF Kid Ambassador for a second year,” said Angelica of television’s America’s Got Talent fame. “My mom is my hero, because she brought me and my dreams of singing back to life. I’m glad I get to be a hero by helping kidney patients like me, so they can reach their own dreams!”

On Tuesday, March 5th – Day 2 of the Kidney Patient Summit – Angelica will be available for media interviews from 7 a.m. to 10:30 a.m. (please arrange in advance with NKF contacts noted above).  She

will sing at the Summit’s annual Congressional Awards Reception, which will be captured for Facebook Live.

“I’m inspired by the advocates who travel each year to the Kidney Patient Summit,” said Kevin Longino, CEO of the National Kidney Foundation and a kidney transplant patient. “They continue to help push for legislation that would improve the lives of millions of Americans who are living with or affected by kidney disease. Kidney patient advocacy is a critical part of our work at NKF. It gives voice to patients and families as they speak personally to their Members of Congress to make sure they are not forgotten.”

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. The Summit opens Monday, March 4th with a 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

In the United States 30 million 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.  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.