More than 60 patients and family members gathered at Dell Children’s for the third annual Neurofibromatosis Family Day Meeting on Saturday, November 2, 2024. Co-sponsored by the Dell Children’s Neurofibromatosis Center of Excellence, the pediatric neurosciences program, and the Children’s Tumor Foundation, this free meeting allowed patient families affected by NF to learn the latest developments in clinical care and research through presentations and Q&A sessions in both Spanish and English. Attendees also received guidance on school resources and heard firsthand accounts of experiences from other NF families. Young children enjoyed activities throughout the day, such as a magician show and hands-on crafts.
Pediatric neuroscience presentations included “A Clinical Overview of NF1 in Children” by Manikum Moodley, MD, professor of neurology and co-director of the Neurofibromatosis Center of Excellence; “Neurosurgical Problems in Patients with NF” by neurosurgery assistant professor M. Omar Iqbal, MD; “Genetics of NF1” by genetic counselor Natalie Lillie, MS, CGC; “Unlocking School Resources for Students with NF” by social workers Kayla Richards, LCSW, and Keshayka Williams, LCSW; and “Gene Therapies Overview: What Is It?” by neurofibromatosis center coordinator Karla Robles-Lopez, MD, PhD.
The Dell Children’s Neurofibromatosis Clinic is the only Central Texas member of the NF Clinic Network of the Children’s Tumor Foundation. It provides accelerated access for patients with neurofibromatosis as well as comprehensive, multidisciplinary, state-of-the-art care in a family-centered environment. With subspecialty expertise, the clinic is committed to providing the best care to patients and families at each stage of the disease, as well as offering transitional care into the adult NF program.
