The nonprofit foundation is dedicated to improving the health and well-being of individuals and families affected by all forms of neurofibromatosis (NF). It raises research funds, provides information to families and helps develop clinical centers.

Two years ago, Fernandez-Valle played a role in organizing two clinics affiliated with the national foundation, one in Orlando and another in Miami. A clinic also recently was established in Tampa. As of August, there were 40 clinics nationwide.

"It's like one-stop shopping," she said of The Children's Center for Cancer and Blood Diseases at Florida Hospital. "Instead of making families run from one doctor to another and another, all of the physicians with the necessary expertise get together in one room twice a month and work with the patient and his or her family."

The clinics also are unique because they have pediatricians as well as physicians that treat adults, making the transition from pediatric to adult care seamless, said Fernandez-Valle, who last year was named vice president of the Florida chapter of the Children's Tumor Foundation.

She coordinates three regional medical symposia each year in Florida to give families information about the latest research and to provide children opportunities to have fun. The next "Family Fun Day" is scheduled for Oct. 24 at the Orlando Science Center. Contact Jennifer Ketchersid at 407-303-KIDS to reserve a seat.

Source: University of Central Florida