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Making It Count

March 12, 2018

I’ve blogged about how RSRT solicits and reviews proposals. But what happens once an award is made? For most funding organizations making the award is the last step in the process. The MO (modus operandi) is “congratulations on the award, good luck and send us a report in a year or two.” For RSRT making the award is just the beginning, it’s when the real work, and fun, starts.

Firstly, every award is accompanied by a legally binding contract between RSRT and the academic institution or company being funded. Our contracts define the timing of the payments that RSRT will make, when progress and financial reports are due, how intellectual property is handled and more. In addition, in order to leverage the research we fund, our contracts also require that reagents, cell lines, animal models and other research tools be shared with other investigators.

Importantly, the award marks the beginning of a close relationship between the researcher and RSRT. Our Chief Scientific Officer, Dr. Carpenter, and our Director of Research, Dr. von Hehn, and myself continuously monitor progress via phone calls and in person meetings.

When possible we fund scientists to work within Consortia, as we believe the sharing of information, as well as the collective perspectives and experiences accelerates progress. Our goal is to avoid having silos of data that exist in a vacuum but rather to encourage our researchers to interact and share. Our Consortia meet in person twice a year and are in close contact throughout the year. We also facilitate collaborations across consortia and among all funded investigators as well as with biopharmaceutical partners.

Besides providing infrastructure and funds for in person meetings we assist in addressing the unforeseen obstacles that projects often encounter. Sometimes this requires bringing in outside expertise and resources.

We are constantly evaluating novel therapeutic technologies and, when data look encouraging, we recruit the inventors and fund them to evaluate efficacy in treating Rett syndrome. Specifically, we leverage the assays developed by RSRT funded researchers (e.g., Rett cell lines, animal models, etc.) to rapidly assess efficacy of the novel therapeutic technology for treating Rett Syndrome. We also prepare to invest more heavily in the project if preliminary results are positive. Dr. Carpenter and I have strong industry networks and we engage our contacts in biotech and pharma industry on a regular basis to assess interest in partnering on therapeutic programs.

All this activity takes time, effort and experience. But it’s the only way to make progress and to make every award count.