NephCure Kidney International


150 S. Warner Road
Suite 402
King of Prussia, PA 19406
619-540-0186
https://registry.fastercures.org/organization-profiles/1005.html?user=10092


   

TRAIN Inventory Profile

Mission
Strategy/Approach
Research Portfolio
Financials
Key Accomplishments
Leadership
Ask Us About
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Mission

NephCure Kidney International (NKI) is a non-profit, 501c3 organization based in the U.S. but international in scope.NKI is the only organization committed exclusively to support research seeking the cause of FSGS and the diseases caused by Nephrotic Syndrome. Founded in 2000 by four families, NKI seeks to engage the broadest community of people with these diseases, their caregivers, scientists and the biopharmaceutical industry to raise and leverage support leading to better treatments and a cure.

Strategy/Approach

Since our founding in 2000, we have worked hard to understand the biology of Nephrotic Syndrome and FSGS. Early on, there was little to no interest in these conditions from researchers and industry. In response, we invested our resources in attracting the best and brightest in the glomerular disease field to sit on our Scientific Advisory Board. We gave out grants to propel the careers of young scientists and leveraged government dollars through a dedicated advocacy campaign.These early efforts paid off and led to breakthroughs now in clinical use as well as inspired an interest amongst researchers and industry.

At the same time, we positioned ourselves as a leading patient advocacy group amongst families, physician-scientists, and pharmaceutical entities. With strategic vision, we created programs and developed partnerships centered around engaging patients in the research process. Today, we remain dedicated to educating and promoting these opportunities to our constituents that will advance our mission.

In 2015, we launched the NephCure Accelerating Cures Institute, a drug discovery and development initiative. The NephCure Accelerating Cures Institute is a Clinical Care Network and will be comprised of 30 research hospitals and community clinics structured to overcome the obstacles standing in the way of improved therapies for FSGS and Nephrotic Syndrome. Operating under a centralized IRB, they will each have an onsite trial coordinator who regularly screens and informs patients of study opportunities. In addition, each center will upload patient health data into a central repository contributing to better trial design. And, finally, a group of expert nephrologists and clinical trial specialists will be available to consult on both trial design and successful recruitment strategies.

Research Portfolio

Consortia Funding - NKI supports long-term glomerular disease research studies conducted through several large multi-institution consortia known as Neptune Nephrotic Syndrome Study Network, CureGN, and the Midwest Pediatric Consortia. These studies track the patient journey over time to discover the causes of nephrotic syndrome and glomerular diseases and identify promising treatments.

Career Development Grants - Since our inception, NKI has given out grants to fund Basic and Translational projects in 3 areas: Young Investigator, Established Investigator and Bridge Funding.

Partnership Grants - NKI awards annual grants through partnerships with the American Society of Nephrology (ASN) and the Kidney Foundation of Canada.

APOL1 Project - NKI funds a research initiative which identified the gene asssociated with higher incidence rates of FSGS amongst individuals of African descent. This large-scale study has led to groundbreaking ancillary studies in the field.

Financials

Fiscal year 2014

  • Revenue: $5,550,647
  • Assets: -$19,206
  • Grants: $222,629
  • Gifts Received: $3,579,607
  • Total Expenditures: $5,928,805

Key Accomplishments

To date, NKI has committed $13 million to research projects, amounting to 43 research projects.

Funding of the APOL1 project resulted in groundbreaking discoveries surrounding the identification of the gene associated with higher incidence rates of FSGS that affects individuals of African descent.

In 2013, NKI launched the NephCure Kidney Network Patient Registry to accelerate research and increase participation in clinical trials by collecting patient-provided information.

NKI has hosted 10 Podocyte Conferences. Most recently, the 2014 event in Germany attracted 300 of the world's leading scientists.

The launch of the NephCure Accelerating Cures Institute, an innovative model unique to the kidney field, employs strategies form successful rare disease care networks combined with new programs that incorporate patient -informed research.

As the trusted broker to the community, we proactively inform patients about 20 Nephrotic Syndrome trials presently recruiting.

Leadership

Board of Directors

  • Irv Smokler, Ph.D. – President 
  • Ron Cohen - Vice President
  • Michael Levine – Vice President
  • Carol Smokler, Ph.D. – Secretary
  • Andrew Silverman – Treasurer
  • Elaine Kamil, M.D. – Co-Medical Director
  • David Kershaw, M.D. – Co-Medical Director
  • William Smoyer, M.D. – Co-Medical Director
  • Kathleen Broderick
  • Claire Cascio, R.N.
  • Jim Duquette
  • Richard Foster
  • Jennifer Geisser 
  • Scott Goldstein
  • Sarretta McDonough, Esq.
  • John Roy
  • Joshua Roy
  • Sondra Stubblefield
  • Charles Turner
  • Manu Varma
  • Chris Whitney
  • Mark Stone – Chief Executive Officer (Acting)

Scientific Advisory Board

  • Chairman – Martin R. Pollak, M.D..Harvard University
  • Gerald Appel, M.D., Columbia University 
  • Ross Cagan, Ph.D., Mount Sinai School of Medicine
  • Daniel Cattran, M.D., University of Toronto
  • Marilyn Gist Farquhar, Ph.D., University of California (San Diego)
  • Friedhelm Hildebrandt, M.D., University of Michigan
  • Lawrence B. Holzman, M.D., University of Pennsylvania 
  • Frederick Kaskel, M.D., Ph.D., Albert Einstein College of Medicine
  • Peter Mundel, M.D., Harvard University
  • Jochen Reiser, M.D., Ph.D., Rush University Medical Center
  • Andrey S. Shaw, M.D., Washington University (St. Louis)
  • Karl Tryggvason, M.D., Ph.D., Karolinska Institutet (Stockholm)
  • Roger Wiggins, M.D., University of Michigan

Staff

  • Chief Executive Officer, Mark Stone, 816-536-7997
  • National Director - Research & Engagement, Lauren Lee (610)540-0186 ext. 32
  • National Director - Program Operations, Jessica Martin (610)540-0186 ext. 27
  • Manager, Development, Lauren Eva (610)540-0186 ext. 21
  • Manager, Research Education, Abbey Swan (610)540-0186 ext. 20

 

Ask Us About

  • Clinical trial design and recruitment
  • Innovative funding models
  • Partnering with industry