The NF Clinic

This past summer, the NF Clinic at Children’s Hospital, University of Pittsburgh Medical Center bid farewell to Dr. Nina Schor, as Chief of Pediatric Neurology and to Dr. Gulay Alper, as the NF Clinic Director. Both of these dedicated NF medical doctors vow to “keep NFCA in our hearts” as they each pursue new professional challenges. Dr. Alper will remain active on the NFCA Medical Advisory Board. Fortunately, as one door closes another opens. The NFCA welcomes new faces to the NF Clinic. Dr. Ira Bergman is the new chief of Pediatric Neurology and Dr. Amy Goldstein will share responsibilities together with Dr. Kathy Gardner, as Co-Coordinators for the NF Clinic Pittsburgh.

Individuals and families may be evaluated by NF Clinic health care professionals. Appointments may be made by calling (412) 692-5520, and inquiring about the NF Clinic.

The NF Clinic is located on the ground level of the DeSoto Wing at Children’s Hospital of Pittsburgh. NF patients are evaluated on the 4th Wednesday of every month. An estimated 20-25 patients are seen per clinic.

NF social worker Sinikka Davis is available for individual, family, or group support. Please contact Sinikka Davis, MSW at Children's Hospital of Pittsburgh at (412) 692-6544 (voice mail) or (412) 692-5255.

For more information on the NF Clinic, please follow this link: CLICK HERE

For information pertaining to Gamma Knife Surgery at UPMC

Gene Testing for NF

In the past, testing to determine whether an individual has the changed gene that causes either type of NF has required that at least two family members with NF and multiple family members without NF provide blood samples. This type of testing is called linkage analysis.

Recently direct gene testing has become available. Direct gene testing means an individual can be tested without blood samples from other relatives. However, direct gene testing is not 100% accurate. Further research is necessary to make the testing for both NF1 and NF2 more accurate. Individuals who want more information about direct gene testing should consult a geneticist.

For further information, call or write:

NEUROFIBROMATOSIS CLINICS ASSOCIATION
PO Box 14185
Pittsburgh, PA 15239
(412) 795-3029

General Information
info@nfpittsburgh.org

NFCA Social Worker
NFSocialWorker@nfpittsburgh.org