research news Compound Scouting Service for Researchers The Children’s Tumor Foundation has initiated a very useful program for researchers. Marco Nievo, the Patent Attorney from CTF, and Salvo La Rosa, the Foundation’s Research and Development Director, have set up a service for NF scientists who are looking for compounds and drugs to be tested. Their medicinal chemistry background and expertise in getting collaboration agreements finalized, together with access to specific information databases, allowed for successful interaction with a few academic centers and external groups. This has
helped researchers get their hands on quality compounds in a short timeframe and allowed them to set their experiment with molecules which have the best chance to deliver a good hypothesis and become a potential treatment for the clinic. Furthermore, each compound’s mechanism is investigated and potential alternatives are identified and proposed to the scientists. Follow the progress of the Children’s Tumor Foundation in its mission to deliver effective treatments to the clinic, and to improve the overall health and well-being of all who live with neurofibromatosis:
promised
done
to do
Bring treatments to patients
NF Preclinical Consortium informed or resulted in 14 clinical trials
NF Therapeutics Consortium for NF1 and Synodos for NF2
Support Research and Development (R&D) service to academia
Compound scouting service - help find the best rather than the one that is available – by R&D Director
Expand R&D service
Material transfer agreement service by CTF Patent Attorney Foster/fund collaboration between academia and industry
Two consortia of academia/industry collaborations show huge promise
Increase funding
Create way to share data between researchers/clinicians
Scientist hired to lead data warehouse project
Select best data warehouse and populate with data
Create practical guide for those receiving a new diagnosis of NF1
“Newly Diagnosed with NF1: A Guide to the Basics” will soon be available online and in print
A similar guide for NF2 and schwannomatosis
Find ways to improve quality of life for NF families now – do something that impacts families directly
Internet Support Group Study to discover best practices for online groups
Use study results to set-up effective online support groups
NF Conference Report Accepted for Publication The Children’s Tumor Foundation is pleased to announce that the American Journal of Medical Genetics, a highly regarded peer-reviewed publication, recently accepted a detailed report on the Foundation’s 2012 NF Conference. The article,
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“Children’s Tumor Foundation Meeting 2012: Translation of the Basic Understanding of the Biology and Genetics of NF1, NF2, and Schwannomatosis Towards the Development of Effective Therapies,” will appear in an upcoming issue.