QOL-14. Milton Marks Neuro-Oncology Family Camp (MMFC): 10 years of community building and support for families with a parent diagnosed with brain cancer

Abstract BACKGROUND Studies show that having a parent with brain cancer profoundly impacts the family unit, leading to increased isolation and long-term adverse psychiatric effects, particularly in children. MMFC is a free, immersive, art-focused weekend retreat, offered in collaboration with the UCSF Gordon Murray Neuro-Oncology Caregiver Program, for families in which one parent has a primary brain tumor and children living at home. The camp aims to reduce isolation by strengthening community within and among families and their care teams. METHODS Volunteer staff include UCSF medical providers, camp counselors, psychologists, musicians, bodyworkers, portrait photographers, and art therapists. Camp consists of family activities and separate activities designed for children and parents. Outcomes were analyzed using surveys administered to attendees before camp, immediately after, and one year later. Surveys include standardized measures and questions about camp impact. RESULTS From 2014-2024, an average of 11 families (24 children) participated each year, with 64% having fathers and 36% having mothers with brain tumors. Children ranged in age from infancy to 19 years, with most between 4 and 17 years. Over 70% of 108 attendees reported that attending camp increased their trust and openness with their medical teams. Families also reported increased closeness within their families, and 85% of children and 88% of parents reported increased comfort discussing the illness. Families demonstrated a decrease in symptoms of depression, anxiety, stress (DASS-21: 55% score reduction, p <.0003) and isolation. Importantly, even one year post-camp, families report continued meaningful connections with other families, improved coping with stress, improved quality of life, and a positive change in their relationship with their medical team. CONCLUSION Families of patients with brain cancer face high risks of isolation and emotional challenges. We highlight MMFC as a novel immersive model for improving quality of life for families alongside their medical care teams.

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Publication Details

Journal
Neuro-Oncology
Published
2025-11-01
DOI
https://doi.org/10.1093/neuonc/noaf201.1515
Primary Topic
Family Support in Illness
Type
article
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article

QOL-14. Milton Marks Neuro-Oncology Family Camp (MMFC): 10 years of community building and support for families with a parent diagnosed with brain cancer

Susan Chang, Abigail Levinson Marks, Keith D. Paulsen, Jennifer Clarke et al.
Neuro-Oncology
Family Support in Illness
article

QOL-14. Milton Marks Neuro-Oncology Family Camp (MMFC): 10 years of community building and support for families with a parent diagnosed with brain cancer

Susan Chang, Abigail Levinson Marks, Keith D. Paulsen, Jennifer Clarke, Jennie Taylor, Cherrie Demayo, Lily Gebhart
article en

Abstract

Abstract BACKGROUND Studies show that having a parent with brain cancer profoundly impacts the family unit, leading to increased isolation and long-term adverse psychiatric effects, particularly in children. MMFC is a free, immersive, art-focused weekend retreat, offered in collaboration with the UCSF Gordon Murray Neuro-Oncology Caregiver Program, for families in which one parent has a primary brain tumor and children living at home. The camp aims to reduce isolation by strengthening community within and among families and their care teams. METHODS Volunteer staff include UCSF medical providers, camp counselors, psychologists, musicians, bodyworkers, portrait photographers, and art therapists. Camp consists of family activities and separate activities designed for children and parents. Outcomes were analyzed using surveys administered to attendees before camp, immediately after, and one year later. Surveys include standardized measures and questions about camp impact. RESULTS From 2014-2024, an average of 11 families (24 children) participated each year, with 64% having fathers and 36% having mothers with brain tumors. Children ranged in age from infancy to 19 years, with most between 4 and 17 years. Over 70% of 108 attendees reported that attending camp increased their trust and openness with their medical teams. Families also reported increased closeness within their families, and 85% of children and 88% of parents reported increased comfort discussing the illness. Families demonstrated a decrease in symptoms of depression, anxiety, stress (DASS-21: 55% score reduction, p <.0003) and isolation. Importantly, even one year post-camp, families report continued meaningful connections with other families, improved coping with stress, improved quality of life, and a positive change in their relationship with their medical team. CONCLUSION Families of patients with brain cancer face high risks of isolation and emotional challenges. We highlight MMFC as a novel immersive model for improving quality of life for families alongside their medical care teams.

Neuro-OncologyVol. 27(Supplement_5)
Palo Alto University (US), University of California, San Francisco (US), Neurosciences Institute (US), Neurological Surgery (US)
Openalex Percentile: Top 56%
Family Support in Illness
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