KCA Annual Report & Financial Disclosures

Our vision: A world without kidney cancer
Our mission: The elimination of death and suffering from renal cancers

Since it was established in 1990, consistent with the vision of the organization’s founder, Eugene P. Schonfeld, Ph.D., the KCA’s plan of work continues to be executed in these primary areas:

  1. Education
  2. Research
  3. Advocacy

A summary of the past year’s program service accomplishments

Patient & Medical Education

During the Fiscal Year ending October 31, 2016, we provided more than 45 education and support opportunities for patients, survivors, and caregivers in various U.S. cities, including national meetings featuring kidney cancer experts, held at M. D. Anderson Cancer Center, Houston, and two others in California, from which enduring educational materials were produced. We hosted online informal Facebook Group interactions for survivors and caregivers, and our Facebook presence has grown to include more than 93,000 people around the globe. We host a growing patient community on the Inspire platform, a peer-to-peer collaboration website for patients, survivors, and caregivers. We sponsored a European Kidney Cancer Symposium in Spain that was attended by hundreds of medical professionals. Later in the year, more than 300 people attended the International Kidney Cancer Symposium in Miami, Florida. We mailed information packets to families and medical professionals, and provided physician referrals to hundreds of patients. Our membership database includes people in the US, Canada, Mexico, and more than 100 other countries. More than 20,000 people receive our monthly e-newsletter and hundreds more watch our monthly video news.

Goal: Increasing our outreach to patients globally

How we accomplish this: by translating the NCCN Kidney Cancer Guidelines for Patients into additional languages and making the publication available online.

Metric: We endeavor to add new translations yearly. A Simplified Chinese and German translation were recently completed.

Goal: Increasing our outreach to medical professionals globally

How we accomplish this: by sponsoring at least two international medical symposia year.

Metric: a meeting is held annually in the USA with another in a different European country each year. The meeting in the USA was held in Miami and a 2017 symposium was planned to be held in Germany.

Research

Our Nurse Advisory Board completed a review of We Have Kidney Cancer, our patient publication that has grown to more than 100 pages, and that is now distributed around the world. Our partnership with EmergingMed has resulted in the referral of patients to sites conducting clinical trials. Our Nurse Hotline answered hundreds of calls from patients. We made grants to the AUA Foundation and to the ASCO Conquer Cancer Foundation to support the work of young investigators. We also made a financial commitment to support projects associated with the Kidney Cancer SPOREs. In 2016, and our directors authorized young investigator awards.

Goal: Increasing our knowledge about kidney cancer through sponsorship of research projects

How we accomplish this: by working collaboratively with the Kidney Cancer SPOREs, and the ASCO and AUA research foundations to fund the work of young investigators.

Metric: the list of projects we have supported is published on our website, and at least two or more projects have been initiated each year for the past several years.

Advocacy

In our role as an advocate on behalf of patients, we continued collaborations with organizations such as, Cancer Leadership Council, Foundation for NIH, National Cancer Comprehensive Network (for which we sponsored NCCN Kidney Cancer Patient Guidelines®), Patient Advocate Foundation, the National Coalition for Cancer Research, and various groups concerned with improving the nation’s health care. We continued highly effective collaborations with institutions interested in conducting cancer research, including our CEO’s membership on NCI’s Renal Cancer Task Force.

Goal: To identify common goals aimed ultimately at the elimination of death and suffering from all cancers

How we accomplish this: by striving to identify new opportunities for working collaboratively with other voluntary health organizations.

Metric: the number of relationships we have established continues to grow. As an example, from 2010 through 2016 we participated in various meetings in North America, Europe, Latin America, and Russia aimed at increasing public awareness of the need for improvement of public health care and the promotion of research.

Our capacity to attain these objectives, as well as being able to identify new ones, relies primarily on the level of public support for our mission. Monetary contributions are essential to this accomplishment. Even in difficult times, we strive to find new sources of revenue, as well as identify new volunteers willing to assist us, so that our goals continue to be met. Our full time staff is very small, so volunteers remain an essential asset.

This efficiency would not be possible without the dedication of our governing board, medical advisers, volunteers, and other collaborators who contribute selflessly to advance our objective: the elimination of death and suffering from renal cancers.


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