At the Foundation we are currently preparing materials for our strategic planning meeting that will set the course of funding for NF research over the next five years. There are many materials that need to be created and collected for such an important meeting, one of which is a retrospective on the last five years of research prepared by our Chief Scientific Officer, Dr. Kim Hunter-Schaedle. This is a lengthy document that we will post in its entirety following the meeting but we wanted to share these bullet points that highlight the accomplishments of the last five years:
In 2006 the NF community had:
– Few NF specific clinical trials
– Limited preclinical drug testing
– No centralized information on individual NF clinics
– No national NF tissue bank or patient registry
– No or very limited industry interest in NF
In 2011 the NF community has:
– Nineteen ongoing NF-specific clinical trials
– An active preclinical ‘pipeline’ in which CTF has entered fifty drugs or combinations
– NF Clinic Network and increased consensus on aspects of NF clinical care
– A national NF BioBank and Registry
– Engaged biotech and pharma – via our preclinical and clinical programs – and by enhancing NF visibility via philanthropic platforms e.g. BIO, FasterCures
If you are reading this post you have had a hand in in these accomplishments, and for that we are very grateful to you.
