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The following was written by Dr. Kim Hunter-Schaedle.

There are many reputable medical research foundations but the Children’s Tumor Foundation sets itself apart with our commitment to fiscal responsibility and transparency.  As a recipient of Charity Navigator’s four-star (highest) rating we have demonstrated that a dollar invested in the Foundation is a dollar well spent.  Whether you are interested in helping to treat learning disabilities, deafness, blindness, scoliosis, bone deformities, cancer or any of the other complications of NF, here are five reasons to fund medical research through the Children’s Tumor Foundation:

1. More of your money gets to the researcher: if you make a donation to a university, hospital or other institution, you may feel that this is the best way to make sure your donation gets directly to the researcher of your choice. However, many universities, hospitals and institutions hold back as much as two-thirds of your donation in ‘indirect,’ ‘overhead’ or ‘administrative costs,’ because this is the amount of ‘indirect’ costs that the institution can claim from National Institutes of Health grants – the gold standard. So from a donated grant of $100,000, it is possible the researcher will see only $30,000.
   In contrast, CTF caps universities at 10% maximum overheads on our grants. So from a $100,000 grant, the researcher will see $90,000. To date we have not had an institution decline a grant because of this. 

2. Funding the best research, wherever it is: Many people feel inclined to keep their funding local and/or feel attached to a specific researcher at a specific institution. But how do you know that researcher is at the cutting edge of the field? The answer is in most cases you wont know.
   An investment in the Children’s Tumor Foundation is an investment in the very best science in the world wherever it may be.  All CTF funded programs are open to applicants worldwide. We fund only the top tier applications recommended by our Research Advisory Board which is comprised of international experts on neurofibromatosis, cancer and related research areas.

3. Be part of a pipeline, and put funding where it is most needed today: If you donate funds directly to researcher or institution, how do you know that their work is not currently being duplicated elsewhere in the world and funded by someone else?
   The Foundation conducts ongoing ‘landscape monitoring’ to determine which areas of research are being funded at any one time. This information informs our strategic planning to determine the areas of research most in need of funding in order to accelerate new discoveries to clinical therapies.

4. Oversight and accountability: If you donate funds directly to a researcher or institution, how and by whom is progress monitored? Can you guarantee the feedback you will receive?
   All research funded by the Foundation is monitored through ongoing progress reporting and follow-up even after our funding has expired– for example, our awardees success in securing follow-on funding. This information allows us to monitor the long-term impact of CTF funding, and to integrate that information back into the neurofibromatosis landscape to inform future decision making on funding directions to take.

5. Ensure discoveries move forward: If you donate funds directly to a researcher or institution, and a discovery is made leading to a patent, how can you be sure it will be advanced for the purposes for which you’ve funded rather than a potentially more lucrative purpose?
   Recipients of Children’s Tumor Foundation funding are required to sign a CTF Patent Policy.  This provides the Foundation the opportunity to have a ‘seat at the table’ when decisions are made at the institution about patenting and licensing a discovery; rights for CTF to claim back the discovery or patent if it offers promise for patients but the institution does not advance it; and, if the discovery becomes a commercial success, a share in the revenue stream for the Foundation to plow back into other research projects.

If you have any questions about any of the information provided in this space please fee free to ask below or email us at info@ctf.org.