Nurse Shared Personal Journey With Neurofibromatosis

Victoria McClosky discussed living with neurofibromatosis type 1 at a 2026 nursing summit in Houston.

Updated on Oct. 9, 2026 in Cancer

Gouache-painted illustration of a glass beaker with a small green plant, representing patient-centered care and medical advocacy. — Victoria McClosky, a nurse specialist at MD Anderson Cancer Center, advocates for emotional validation and goal-concordant care for patients with chronic disorders. AI Illustration. Upload story photo >

Live Poll

Do you believe medical providers with personal experience of a condition offer better patient care?

In 2026, Victoria McClosky presented her experience living with neurofibromatosis type 1 at the 11th annual Oncology Nurse Advisor Summit. McClosky, a specialist at the University of Texas MD Anderson Cancer Center in Houston, highlighted the importance of goal-concordant care.

Why it matters

McClosky uses her personal medical history and professional background to teach nursing students how to better support patients. By advocating for emotional validation, she aims to help clinicians identify sources of joy for those facing chronic genetic disorders.

The FDA approved selumetinib in 2020 and mirdametinib in 2025 as the first and second MEK inhibitors for pediatric patients with symptomatic inoperable plexiform neurofibromas.

The players

Victoria McClosky

She is a nursing professional development specialist at the University of Texas MD Anderson Cancer Center who lives with neurofibromatosis type 1.

University of Texas MD Anderson Cancer Center

Located in Houston, this institution is a comprehensive cancer center focused on patient care, research, education, and prevention.

FDA

This federal agency is responsible for protecting public health by ensuring the safety, efficacy, and security of human and veterinary drugs.

The details

McClosky, who underwent hip surgery in early 2025, emphasizes that nursing care should focus on understanding a patient's personal needs. She draws on her career, including eight years of work in an outpatient breast clinic, to inform her approach to patient advocacy.

The FDA approved the first MEK inhibitor for NF1 patients in 2020.
Victoria McClosky underwent hip surgery in early 2025.
The FDA approved mirdametinib for NF1-PN treatment in 2025.
The 11th annual Oncology Nurse Advisor Summit was held in 2026.

Health Landscape

The introduction of two distinct MEK inhibitors into the standard of care reflects a rapid evolution in the treatment landscape for rare genetic conditions. These advancements align with broader trends in targeted oncology therapies that prioritize patient-specific outcomes.

Patients dealing with NF1 now have access to two FDA-approved inhibitor therapies that were not available just a few years ago. McClosky’s advocacy encourages individuals to ask their healthcare providers about these options and to prioritize care plans that align with their personal life goals.

The takeaway

Nurses play a critical role in supporting patients beyond clinical administration by validating personal experiences and emotional needs. Individuals navigating chronic conditions can improve their quality of care by actively participating in discussions about their life goals with their medical team.