Frequently Asked Questions About Kidneeds
Q: What is Kidneeds?
A: Kidneeds is a fund of the Greater Cedar Rapids Community Foundation. It is organized as a not-for-profit corporation in the state of Iowa. Kidneeds has 501 (C)(3) status, so donations are eligible for tax deductions as permitted by law.
Q: Why do we need Kidneeds if there is a National Kidney Foundation?
A: While the National Kidney Foundation does provide research money for some kidney diseases, it has funded very few researchers focused on DDD. They also provide other services with their donations outside of funding research. Kidneeds gives 100% of all donations to DDD research.
Q: Who decides if grants are good enough to be funded?
A: Kidneeds has two boards, the Board of Scientific Advisors and the Board of Directors. When the grants are submitted to Kidneeds, they are sent to the Board of Scientific Advisors (BOSA). The BOSA awards a score to each grant application. These scores and grant summaries are then sent to the Kidneeds’ Board of Directors. Kidneeds’ Board of Directors recommends funding based on merit and funding availability. Their recommendation is forwarded to the Greater Cedar Rapids Community Foundation Board of Directors for final funding approval.
Q: How does Kidneeds get money to fund the grants?
A: 99% of the money donated to Kidneeds is donated by people who know just one family or patient with DDD. About 1% comes in from grants from other funds. Kidneeds does not have a fundraising arm. It relies on friends and family to put on benefits for Kidneeds. Since 100% of Kidneeds’ donations go to research, every one who helps with Kidneeds is a volunteer. Administrative and all associated costs are paid for by a private individual.
Q: How can I help?
A: The most important way to help is by donating money to Kidneeds. Kidneeds can receive gifts from the United Way and employee gifts are often matched through a company program. If you would like to host a benefit for Kidneeds, it is important that you first get the benefit guidelines that are put out by the Greater Cedar Rapids Community Foundation. Most of Kidneeds’ benefits have the complete cost of the event donated by the host. We know this is not always possible. Before a benefit is done in Kidneeds’ name, please contact Lynne Lanning at kidneedsMPGN@yahoo.com. There are strict federal guidelines to safeguard donors from benefits that have bad ratios of expense-to-donations. Since the Greater Cedar Rapids Community Foundation (GCRCF) issues the tax deductible recognition letters, it is necessary that all benefits be approved in advance by them.
Q: Are there research projects that I can participate in?
A: Yes, the MPGN Database is an ongoing study of many factors associated with MPGN (please visit the link at the top of this page). The study began 10 years ago and three years ago, a revised version of the survey with additional follow-up questions was programmed on the website for old and new users. We encourage participation in this study. It is the only study of its kind being done from a patient perspective.
There are other studies focused on the genetics of DDD. These studies are looking at Factor H and its association with deposits on the retina, called drusen, which affect people with DDD. In addition, several other complement-related genes are being sequenced to identify other genes that play a role in the development of DDD. To find research opportunities, please contact Lynne Lanning kidneedsMPGN@yahoo.com or Richard Smith at email@example.com.