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Three Stars and Prouder than Ever

January 17, 2019

I’m proud to say that RSRT once again received a three-star rating from Charity Navigator, the organization that assesses the transparency, financial health, and efficiency of non-profits. The “top” rating is four stars. You might say to me—Tim, are you sure you should be so proud to have three stars out of four? My emphatic answer—you better believe I’m proud; given the metrics behind the rating, I wouldn’t want it any other way. Here’s why.

One of Charity Navigator’s metrics is called Liabilities to Assets. In a nutshell, that’s the funds RSRT awards to research divided by the funds we keep in the bank. RSRT scored zero on that metric, and that’s why we got three stars instead of four. In all the other metrics RSRT scored top ratings, including: administrative expenses, fundraising efficiency, program expenses growth, and all measures of accountability and transparency.

So why did we score poorly on Liabilities to Assets? Because RSRT’s financial model is set up to spend maximum funds on research, not to make us sustainable for decades from now. To score higher, we would have to award LESS money to research and keep MORE money in the bank. If we actually did that to achieve four stars from Charity Navigator, I couldn’t look our donors and the families that raise funds for us in the eye. We never have and never will work off of that financial model. I want every single dollar that comes to RSRT to be funding research and attacking this awful disorder. I want every single dollar to be fighting to change my daughter’s life and the lives of every brave child and adult who is ravaged by Rett. That’s not going to happen if we put a bunch of money in the bank. And it’s certainly not going to happen if we award less money to research. So even though it means we get a lower rating, I couldn’t be prouder of how RSRT’s financial model is set up to advance us as quickly as possible to achieving our goal—a cure. As far as I’m concerned, four stars can kiss my grits (with a nod to the old TV show Alice).

The Liabilities to Assets metric is not a bad measure of a non-profit like a museum or a university that hopes to be around 20 or 30 or 100 years from now. If you build up your assets, you’re aiming to be sustainable—to exist in perpetuity—and it makes sense for part of your measure of success to be based on how well you are doing that. But at RSRT we have no interest in that. Our aim is to cure Rett Syndrome, not be a sustainable organization. In fact, my great hope is that one day RSRT will cease to exist and I’ll be unemployed. Because when that happens, it will mean our research has reversed this disorder and profoundly changed 350,000 lives.

You might guess by my tone that this issue sticks in my craw a little. You’re right. I’ve written about it before: Three Stars and Proud. Third-party assessment of non-profit effectiveness and efficiency is a good thing, and I welcome it any time for RSRT. But it’s important to be aware that these assessments are incomplete. To give a true picture, metrics would have to distinguish between organizations that have an end-goal of a cure and organizations that raise funds, in part, to sustain themselves and provide their services many years from now. Without different metrics for those two very different objectives, ratings are comparing apples and oranges.

Beyond that, ratings don’t address the most important measure of all—Is the science we’re funding of the highest quality and is it moving us as quickly as possible towards eradicating Rett Syndrome? In this regard, RSRT makes me prouder than a thousand stars from any rating. My pride here stems from the tenacity and expertise of my colleagues Monica Coenraads, Randy Carpenter, Tim Riley, and Jana Von Hehn, and in my deep confidence that the research we fund is absolutely top shelf and is being carried out strategically, transparently, and always with one directive—move as fast as possible to a cure.

(NB: I have a dialogue going with Charity Navigator and they seem open to continuing the conversation about making their rating system more accurate and complete.)