Celebrating 35 Years

2012 Marty Ginsberg Grant Awarded To University Of Chicago NF Clinic

The 2012 Marty Ginsberg Grant has been awarded to the  University of Chicago’s Neurofibromatosis Program. The Neurofibromatosis (NF) Program at the University of Chicago was established in 1989 by Dr. James Tonsgard to advance clinical care and research for NF. The core clinical group includes Dr. James Tonsgard and clinicians in various specialties. The University of Chicago NF clinic has seen close to 1500 patients and maintains a detailed database of each patient visit with more than 489 data points. The data provides a longitudinal record of the patients. This includes not only a listing of characteristics of the patient, but also the progression of the disorder and the effect of treatments over time. This valuable data helps scientists and physicians understand how often a particular complication of neurofibromatosis may occur and what treatment if any, may be the most effective. At the University of Chicago, Neurofibromatosis Midwest is funding a nurse/data manager to maintain the database and to submit and supervise clinical research protocols. This grant also funds a nurse for Saturday clinics.

Marty Ginsberg was a founding member of Illinois Neurofibromatosis, Inc. which is now Neurofibromatosis Midwest and a huge supporter of the University of Chicago’s NF program. We are honored to be able to continue his legacy.


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