There are countless privately directed cancer research foundations. They operate under the guidance of a donor, or under the guidelines established by a donor or board. Most of these do not seek supplemental income, and many operate off of the interest on the funds held by the foundation. Since these are essentially private funds, they have the right to direct them as they please. I assume these are not the foundations you’re concerned about.
However, when it comes to non-profit organizations, corporate foundations and the like, accountability is a challenge! Most cancer non-profits are monitored by the IRS and do adhere to the tax codes. Each non-profit files an annual 990 Form which discloses some of this information, but it is also easy to hide overhead in program lines, a smoke-and-mirrors game that makes them look like a much healthier organization than they are. I have concerns about the salary lines at the top of some organizations, as well as whether the money they distribute is consistent with their stated missions.
My goal is greater transparency. Non-profits who are truly in it for their mission should disclose, in plain English, how their money is spent. Any donor should be able to readily discern how much goes to direct service, overhead, research, etc, BEFORE a donation is made. Non-profits need to keep in mind that donors are significant stakeholders.
Another concern I have is the emergence of cause marketing. Countless companies now brand themselves with a high-profile non-profit, or use these partnerships to sell products. In this case, I believe every product label or advertisement should include the nature of the partnership (i.e. how much per purchase is donated to which organization under what circumstances). Caps on donations should also be disclosed, and again, the information about what is done with the money should be readily available (for example, by visiting a website that is also included in the advertising).
Until we have such a system, if I do not feel I can get the information I need to assure myself that their giving is in keeping with my priorities, I tend to give to local, direct-service organizations and local research foundations, where a personal relationship goes a long way to being able to follow the money.
A recent proteomic discovery in inflammatory breast cancer (IBC) is already in a phase 1 clinical trial. Through the collaborative work of Chip Petricoin & Lance Liotta at George Mason University and Fredika Robertson at M.D. Anderson, ALK (a protein called anaplastic lymphoma kinase) a key driver in human IBC samples was identified. As stated, this is still early stage research but it is already in the clinic in a phase 1 trial because there is a compound targeting ALK currently approved for use in lung cancer. While this won't be a treatment option for all patients, it is another step in personalized medicine to aid those with this deadly form of breast cancer. It is hoped that continued proteomic exploration will identify additional therapeutic targets. http://www.eurekalert.org/pub_releases/2011-11/gmu-gmu111411.php
Proteomics is a modern version of protein biochemistry. It combines methods and approaches from classic protein biochemistry with analytical chemistry and computer science to study the “proteome”. The proteome is defined as the entirety of proteins expressed by an organism, tissue, cell or organelle at any given time. In contrast to the genome, the proteome is highly dynamic, therefore reflecting changes throughout development, external influences (i.e. environment) and/or disease. Proteomics is a specific scientific discipline to study the proteome. This new type of science termed “systems biology” has the goal to study an organism at the systems level (i.e. obtaining information on all proteins present in a cell, rather than studying a single protein and/or pathway). In terms of cancer research, proteomics has several main applications. First, model organisms such as cell culture models or animal models are used to study basic mechanisms of cancer research. These could be identification of changes in the cellular proteome in cancer cell lines in response to a treatment, identification of protein targets of a given drug, etc. Similar approaches are also applied using banked human tissues from biopsies or surgery. A second application of proteomics in cancer research is for the discovery of biomarkers. A biomarker is a biological substance (i.e., protein, lipid, post-translational modification, etc.) that is used to evaluate the presence, progression, or treatment-response of a disease. To be clinically useful, a biomarker should be readily accessible (i.e. from body fluids) and provide sufficient sensitivity and specificity by minimizing false negatives and false positives. Since proteomics is a powerful tool to identify and quantify hundreds to thousands of proteins in a single sample intense research has been focused on proteomics-based biomarker discovery. The main analytical platform that is used to study these questions is mass spectrometry, a powerful tool for the identification and quantification of proteins in complex systems.
Bioinformatics is computer science applied to biological questions. Since all genomics-type sciences such as next-gen sequencing, transcriptomics and proteomics generate large amount of data, computational and statistical approaches are required to evaluate and analyze the generated data to guarantee high data quality. Additionally, since more and more proteomics and genomics data are generated and deposited into the public domain data mining and integration strategies, based on bioinformatics, are becoming more common. In the context of cancer research integration of multiple datasets can be used to validate individual results and prioritize biological pathways or targets for validation. Bioinformatics is therefore highly integrated with proteomics for the interpretation of results. Ultimately these types of “systems” strategies will shed new light on cancer biology and ultimately provide better understanding human cancer biology. This in turn will lead to more rationally designed drugs, more individualized treatments and better biomarkers.
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However, when it comes to non-profit organizations, corporate foundations and the like, accountability is a challenge! Most cancer non-profits are monitored by the IRS and do adhere to the tax codes. Each non-profit files an annual 990 Form which discloses some of this information, but it is also easy to hide overhead in program lines, a smoke-and-mirrors game that makes them look like a much healthier organization than they are. I have concerns about the salary lines at the top of some organizations, as well as whether the money they distribute is consistent with their stated missions.
My goal is greater transparency. Non-profits who are truly in it for their mission should disclose, in plain English, how their money is spent. Any donor should be able to readily discern how much goes to direct service, overhead, research, etc, BEFORE a donation is made. Non-profits need to keep in mind that donors are significant stakeholders.
Another concern I have is the emergence of cause marketing. Countless companies now brand themselves with a high-profile non-profit, or use these partnerships to sell products. In this case, I believe every product label or advertisement should include the nature of the partnership (i.e. how much per purchase is donated to which organization under what circumstances). Caps on donations should also be disclosed, and again, the information about what is done with the money should be readily available (for example, by visiting a website that is also included in the advertising).
Until we have such a system, if I do not feel I can get the information I need to assure myself that their giving is in keeping with my priorities, I tend to give to local, direct-service organizations and local research foundations, where a personal relationship goes a long way to being able to follow the money.
http://www.eurekalert.org/pub_releases/2011-11/gmu-gmu111411.php
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