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:
A summary of the past year’s program service accomplishments
Patient & Medical Education
During the Fiscal Year ending October 31, 2013, we provided more than 60 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 another in San Francisco, 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 85,000 people around the globe. Two years ago, we launched KidneyCancer.me, a peer-to-peer collaboration website for patients, survivors, and caregivers. We developed and revised two patient-friendly smartphone educational applications for the iPad, iPhone, and Android platforms, bringing the total number of apps to three (with a fourth planned for 2014). We sponsored the European Kidney Cancer Symposium in Budapest, Hungary. Hundreds of medical professionals attended. Later in the year, more than 200 people attended the International Kidney Cancer Symposium in Chicago. Board member Mike Lawing prepared PDF summaries of the medical presentations that are easily understood by patients and their families. We mailed scores of information packets to families and provided physician referrals to hundreds of patients. Our membership database includes people in the US, Canada, Mexico, and more than 100 other countries. About 20,000 people receive our monthly e-newsletter and hundreds more watch Kidney Cancer News, the monthly video magazine featured on our home page.
Goal: Increasing our outreach to patients globally
How we accomplish this: by translating our publication, We Have Kidney Cancer into several additional languages and making it available online
Metric: total languages supported to date is 13. We endeavor to add a new translation each year. A revision of the Spanish language translation was 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. Attendance in Europe has increased substantially over time
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 SPORE, based in Boston.
Goal: Increasing our knowledge about kidney cancer through sponsorship of research projects
How we accomplish this: by working collaboratively with the Kidney Cancer SPORE, 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
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, Patient Advocate Foundation, the National Coalition for Cancer Research, Friends of 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 various NIH committees.
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 2013 we participated in various meetings in North America, Europe, Latin America, and Africa aimed at increasing public awareness of the need for improvement of public health care and the promotion of research. In 2013, we provided links to helpful information resources for patients who were confused and frustrated while attempting to register for health insurance under the newly implemented Affordable Care Act (also known as Obamacare)
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 the most difficult times, we strive to identify new sources of revenue, as well as identify new volunteers willing to assist us, so that our goals continue to be met. Our fulltime staff is very small, so volunteers are an essential sustaining 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.