2026 NF Knowledge Series: From Isolation to Empowerment; Building Hope, Resilience, and Community in NF

The May NF Knowledge Series: From Isolation to Empowerment: Building Hope, Resilience, and Community in NF webinar was hosted by Ethan Lester, PhD, Massachusetts General Hospital, Harvard Medical School. In this engaging webinar, Dr. Lester explored how individuals living with all types of neurofibromatosis and schwannomatosis can move from isolation and distress toward connection, resilience, and hope.

Understanding the Emotional Impact of NF

Dr. Lester began by acknowledging that living with NF can affect far more than physical health. Chronic illness often brings ongoing stress, uncertainty, and emotional challenges that can impact quality of life. Research shows that people living with NF may experience higher rates of anxiety, depression, loneliness, and social isolation compared to the general population.

He emphasized that these experiences are not uncommon and that emotional struggles are a natural response to navigating a complex and often unpredictable condition.

"Many people with NF describe this feeling of being different, misunderstood, or judged," Dr. Lester explained. "And for many individuals living with NF, the psychological and social burden of the disease can be as life-altering as the physical symptoms themselves."

What Resilience Really Means

A central focus of the webinar was resilience, which is the ability to adapt and continue moving forward in the face of adversity, stress, or uncertainty. Dr. Lester reminded participants that resilience does not mean ignoring difficult emotions or pretending challenges do not exist. Instead, it involves developing tools that help people navigate those experiences more effectively.

Importantly, resilience is not something people either have or do not have. It is a skill that can be learned and strengthened over time.

"Living with NF means that you're resilient," Dr. Lester shared. "Even if you don't always feel like a resilient person, the fact that you're here and continuing to move forward is a sign of resilience."

Throughout the webinar, he introduced several practical approaches that can help individuals manage stress and build emotional resilience.

Building Coping Skills Through Mind-Body Strategies

Dr. Lester discussed several techniques commonly used in mind-body resiliency programs, including relaxation exercises, mindfulness, adaptive thinking, and acceptance-based strategies. These approaches are designed to help individuals better manage stress, chronic pain, uncertainty, and difficult emotions.

One technique highlighted during the session was "box breathing," a guided breathing exercise used to calm the body's stress response and help individuals feel more grounded in the present moment. Participants also practiced a mindfulness activity called "Leaves on a Stream," which encourages people to observe thoughts and emotions without becoming overwhelmed by them.

Dr. Lester also spoke about the importance of adaptive thinking. Not forcing positive thinking, but learning to approach challenges in ways that are more balanced, flexible, and helpful.

"Adaptive thinking is not positive thinking," he explained. "It's resilient thinking."

The Power of Community and Social Support

A major theme of the webinar was the importance of connection and belonging within the NF community. Dr. Lester explained that social support can take many forms, including emotional support, practical assistance, informational resources, and opportunities to connect with others who share similar experiences.

He encouraged participants to actively seek opportunities to connect through organizations such as the Children's Tumor Foundation (CTF), support groups, educational events, and community activities.

"Nobody fights alone with NF," Dr. Lester said, referencing a phrase that resonated throughout the presentation. "That's why we're here."

For many individuals and families affected by NF, finding a sense of belonging can be transformative. Dr. Lester noted that meeting others who truly understand the NF experience can reduce feelings of isolation and create opportunities for encouragement, friendship, and empowerment.

Supporting Families and Caregivers

The webinar also addressed questions from caregivers about supporting children living with NF. Dr. Lester emphasized the importance of having honest, developmentally appropriate conversations with children about their diagnosis while helping them recognize their strengths and individuality.

He also acknowledged that caregivers themselves need support and encouraged parents and family members to seek emotional and practical support within the NF community.

Looking Ahead

The session served as an important reminder that mental health is a critical part of overall well-being for individuals and families affected by NF. While challenges such as uncertainty, chronic stress, and isolation can feel overwhelming, meaningful support and connection are available