About Us

What is the NFCA?

The NFCA (Neurofibromatosis Clinics Association, Inc.) is a local, non-profit organization dedicated to serving people with NF and their families. The NFCA acts as an information resource for health care professionals, patients and the general public. Through various fundraising projects, the NFCA provides funding for research to find a cure for NF (Neurofibromatosis), and contributes financial aid to the NF Clinic in the Neurology Department at Children’s Hospital.

Our History

In 1983, an NF Support Group was started in the Pittsburgh area by five individuals whose families were affected by Neurofibromatosis (NF). The group grew in numbers and outreach, eventually finding strong medical support when the Pittsburgh NF clinic was opened in 1989 as a first-of-its-kind regional access to medical specialists for NF.

Traditionally, parents turn to their family doctor for advice and education. Often, physicians have neither the time nor the specific knowledge to counsel families in crisis. The NF Support Group filled this gap by connecting families, providing telephone and personal outreach, family-to-family consultations, social gatherings to promote emotional support, and referrals to the NF clinic Pittsburgh. By 1995, by-laws were established, Articles of Incorporation written, the first annual meeting was held, and finally, non-profit status was attained for the Neurofibromatosis Clinics Association, Inc. (NFCA).

Today, the NFCA is positioned as a mature, engaged nonprofit organization.


NFCA Executive Advisory Board Members

Wanda M. Harper
President
Policy Performance Analyst
Gateway Financial Group

Jeffrey Kramer
Vice President
Vice President - Business Credit Services
Citizens Bank

Joyce Trew
Treasurer
Retired Project Manager
US Steel Corporation

Arlene Fatalino
Director Operations
U.S. Steel Logistics Services

Lorna Irvin
Past President
Owner
Doone’s Inn at Oakmont

William S. Kramer
District Sales Manager
Wolverine Brass, Inc.

MEDICAL ADVISORS

Ira Bergman, MD, PhD
University of Pittsburgh Physicians
Chief of the Division of Child Neurology
Department of Pediatrics at Children’s Hospital of Pittsburgh

Kathy L. Gardner, MD
Co-Director, NF Clinic
University of Pittsburgh Physicians
Department of Neurology

Amy Goldstein, MD
Co-Director, NF Clinic
University of Pittsburgh Physicians
Department of Pediatric Neurology

Beth Heuer
CRNP

STAFF

Sinikka Davis, MSW
NF Social Worker
NF Clinic – Children’s Hospital PGH