Dear Neurofibromatosis Community Member:
In 2006, the Children’s Tumor Foundation (CTF) asked ourselves “what areas of neurofibromatosis research need attention and funding to advance us towards improved therapeutics and better care and outcomes for those living with NF1, NF2 and schwannomatosis?” We issued a Request for Ideas (RFI) to the neurofibromatosis community – researchers, clinicians and lay persons. The responses contributed to our 2006 process of Strategic Planning for Neurofibromatosis Research, a process which resulted in five recommended areas on which CTF should focus over the years that followed:
1. NF preclinical drug screening
2. Establishment of a national neurofibromatosis clinic network
3. Establishment of a neurofibromatosis tissue bank and patient registry
4. Identification of new biomarkers for neurofibromatosis
5. Funding of neurofibromatosis pilot clinical trials
Through investments totaling more than $7 million, the Foundation has initiated programs in each of these areas. Our research portfolio today includes the NF Preclinical Consortium and Drug Discovery Initiative for preclinical drug screening; a national 43-site NF Clinic Network; a Clinical Trial Awards program; and an NF Registry & BioBank. This is in addition to our long-running Young Investigator Award program; ad hoc funding programs including Schwannomatosis Awards; and support of the annual NF Conference and topic-focused consensus workshops.
In 2011, CTF is revisiting the 2006 Strategic Plan to i) evaluate progress as well as identify remaining barriers; and ii) define a 2011 Strategic Plan that will drive CTF’s research and clinical programs over the next five years. Once again we are reaching out to the NF community for input in this process.
NOTE: This RFI is not a solicitation for funding applications. It is a request for ideas and suggestions that will be used to help CTF determine what funding mechanisms we might support in the future.
How to respond to this RFI
· Provide your name and contact info (optional)
· State your relationship to neurofibromatosis (scientist, clinician, individual with NF, etc.)
· Please review and respond to the attached THREE questions.
· Keep each question response to half a page (box shown).
· You are encouraged to think as broadly as possible!
Pleas click here to download the RFI as a Word document. Please click here to download the RFI as a pdf.
Email completed RFIs or questions you may have to: Dr. Kim Hunter-Schaedle, Chief Scientific Officer: khs@ctf.org or FAX to 212-747-0004 – Deadline: January 7, 2011
