Corner Office: Uprooting the Foundation
We have realized that the traditional funding model—one that rather passively hands out grants to promising scientists—simply was not resulting in expedient effective treatments. Too many institutional barriers were in place, too many limitations existed, and we simply could not sit around hoping someone else would tear those barriers down. We turned our funding model inside-out in order to build new mechanisms, create strategic partnerships, and foster a spirit of collaboration between the many different stakeholders inside and even outside the NF landscape: patients, researchers, clinicians, pharmaceutical companies and the biotechnology sector. And while we continue to provide grants to promising scientists for interesting research, we have rebuilt our foundation to realize optimal results. All of these choices were made with one goal in mind: to not merely activate the drug development process, but to set in motion a process that promises to get treatments (and one day a cure) into the hands of our patients.
What does this look like? It looks like tearing down barriers for all of our stakeholders in order to make the search for treatments faster, easier and more effective. We are inviting people from all sectors to collaborate, to share resources and to work together rather than separately find solutions. We are doing whatever it takes to facilitate cross-institutional data sharing. This means providing open access to animal and cellular models, and creating a tissue biobank with open access for all scientists who agree to share their research with others. (This open-source model, while it may sound just like common sense, is quite revolutionary in our world of litigious and overprotective entities.) It involves building and growing a patient registry, an anonymized patient-entered database that can be used to match willing patients to clinical trials. We now offer full drug research and development services, compound scouting services, and even the support of a patent attorney for those who need it. We simply cannot hear excuses anymore.