WASHINGTON – The Kidney Cancer Research Alliance (KCCure) announced today the formation of a national kidney cancer Patient Advisory Board; a non-voting body made up of patients, caregivers and leaders in the cancer community. The board will be led by patient advocates Michael B. Lawing and Debra Gottsleben. Members will provide guidance to KCCure’s research agenda, assist in developing patient education materials, enhance and expand outreach to other patients, and participate as reviewers in KCCure’s research grant process.
“Patient expertise is an untapped resource when it comes to kidney cancer,” said KCCure President, Dena Battle. “This board is an invaluable part of our effort to effectively tailor research priorities based on the needs of all kidney cancer patients. I’m grateful to Michael B. Lawing and Debra Gottsleben for their incredible leadership in bringing this diverse team together.”
“As a 20-year survivor with still active disease I am extremely excited to be a part of this dynamic grassroots organization that is fully committed to increasing funding for meaningful research in kidney cancer,” said Patient Advisory Board Co-chair Michael B. Lawing.
Members will serve for three years after an initial round of staggered appointments to preserve continuity. The board consists of individuals representing varying demographics of patients from across the United States as well as rare histological subtypes, including papillary carcinomas, renal medullary carcinomas and translocation XP11 carcinomas.
“It’s often said that kidney cancer is not one disease, but instead a number of different diseases that occur in the kidney. This board really speaks to that fact by not just bringing patients together – but bringing organizations together.” said Deb Gottsleben, who also serves as co-chair to the Advisory Board. “We’re really dedicated to fostering cooperation, communication and support among the diverse groups representing the kidney cancer community.”
The Kidney Cancer Research Alliance (KCCure) is a grassroots organization of patients, caregivers, and doctors committed to advancing research in the field of kidney cancer by increasing private funding for basic research, promoting collaboration among stakeholders, and magnifying the voice of patients and caregivers.
The organization was launched in 2016 by Dena Battle, who lost her husband to kidney cancer and Dr. Hans Hammers, the medical oncologist who treated him. In less than two years, they have raised over a quarter of a million dollars and have funded $100,000 in direct research awards.