Morristown’s Gottsleben named co-chair of national board to advise kidney cancer patients

ON THE MEND: Debra Gottsleben. Photo courtesy of Debra Gottsleben.
ON THE MEND: Debra Gottsleben. Photo courtesy of Debra Gottsleben.
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When Morristown’s Debra Gottsleben faced the possible loss of a kidney a couple of years ago, she asked all the right questions.

Her inquiries led her to the National Institutes of Health and a top-flight medical team who saved her kidney after discovering her problem was a rare genetic disorder, not cancer.

Now, Gottsleben will help other others with kidney ailments pose the right questions, too. She has been named co-chair of a new kidney cancer patient advisory board by the National Kidney Cancer Research Alliance (KCCure).

Planning Board Members Joe Kane and Debbie Gottsleben compare notes. Photo by Kevin Coughlin
Planning Board Members Joe Kane and Debbie Gottsleben compare notes, Feb. 24, 2017. Photo by Kevin Coughlin

“I will help with outreach to other patients, particularly through social media and through patient advocacy sites such as Smart Patients,” said Gottsleben, who is a librarian at Morristown High School and serves on the town planning board.

“As part of this outreach, I’ll help develop education materials that patients can use to become better informed. I’ll also help with setting a research agenda and then acting as one of the reviewers for research grants,” she told MorristownGreen.com.

KCCure was established in 2016 by Dena Battle, whose husband died from kidney cancer, and oncologist Dr. Hans Hammers, who treated him.

It defines itself as a “grassroots organization of patients, caregivers, and doctors”  committed to supporting basic research, promoting collaboration, and “magnifying the voice of patients and caregivers.”

So far, KCCure says it has raised more than $250,000 and funded $100,000 in direct research awards.

Serving with Gottsleben is co-chair Michael B. Lawing, a 20-year survivor of kidney cancer.

“Patient expertise is an untapped resource when it comes to kidney cancer,” Battle said in a statement. 

“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.”

Gottsleben connected with Battle thanks to a Canadian advocate for kidney cancer patients, who she met via social media.

Gottsleben is an adjunct professor at Seton Hall University and a trustee of the New Jersey State Planning Officials Board. She also is former chairperson of the Morristown Environmental Commission, and past president of the northern New Jersey Branch of the International Cesarean Awareness Network. Her husband is former Morristown Mayor Jay DeLaney Jr.

She said her illness taught her the power of perseverance.

“You really do have a lot more power than you think you do,” Gottsleben told The Powerful Patient podcast earlier this year.

Here is this month’s announcement from KCCures:

KCCure Launches National Kidney Cancer Patient Advisory Board

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.

2 COMMENTS

  1. Kevin thank you for this great article. Hope the work we do will get more research which will lead to a cure.

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