NF advocate Sarah Powlison is sharing her message of hope in a new way—with the release of her debut children's book, Certainly, Sonder. Inspired by the concept that every person has a unique and meaningful story, the book celebrates resilience, empathy, and self-acceptance.

People with Neurofibromatosis type 1 (NF1) are at risk of developing benign and malignant peripheral nerve sheath tumors (MPNST). In NF1, the overall lifetime risk of MPNST is estimated at 8%-13%, with increased risk associated with specific germline mutations and larger benign tumor burden.

On Wednesday, July 29, the NF Network was honored to host the opening night of Rare Square: A Rare Community Art Exhibition at Positive Exposure Gallery in New York City. While the exhibition brought together artists and stories from across the rare disease community, for the NF Network, the evening was a powerful celebration of the creativity, resilience, and individuality of people living with neurofibromatosis.

Our Memphis event chair, Carrie Wylie, and her daughter, Kaitlyn, recently sat down with Dr. Pivnick to discuss the clinic's growth and future. For Kaitlyn—who has lived with NF1 since infancy and has learning disabilities as a result of her condition—the opportunity to interview the physician who has cared for so many families was especially meaningful.