Patients & Survivors: Your Brain Tumor Journey

Explore patient & survivor resources and stories.

Through a quick questionnaire, Join Your Path to Hope streamlines the brain tumor journey, offering immediate, personalized resources for your medical, emotional, and relational needs. Our goal is to empower patients and caregivers with hope and support across all aspects of the journey.

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Patient Stories

Explore inspiring journeys of resilience and hope through our Patient Stories

May 2025 Ambassador Spotlight – Lisa Joerling

Written by Lisa Joerling My brain tumor journey began 11 years ago when I was diagnosed with a ganglioglioma brain tumor at just 19 years old. I was a sophomore at K-State and was home …

April 2025 Ambassador Spotlight – Robert Marx

Written by Robert Marx Spending 26 months caring for someone with a terminal illness gives you a brutally clear perspective on what truly matters. I lost my wife, Elli, to glioblastoma—only to realize afterward that …

Empowering Families: How the Children’s Brain Tumor Foundation Supports Patients and Caregivers

A brain tumor diagnosis in a child is life-altering, bringing challenges that no family expects to face. From navigating treatment options to addressing emotional and financial burdens, families need comprehensive support. That’s where the Children’s …

March 2025 Ambassador Spotlight – Liz Piña

Written by Liz Piña Liz Piña’s husband Julio was diagnosed with anaplastic ependymoma in 2018 when they were both 34 years old. Julio had just begun a new career after serving eight years and one …

February 2025 Ambassador Spotlight – Melissa Lambert

Written by Melissa Lambert It was April 26th 2021, and I was on my way to a physical therapy appointment. I had been struggling the last few months because I had migraines, bouts of vomiting, …

Mini Episode of the Rare Enough Podcast: Maggie Haynes, Director of Events

We are thrilled to announce the release of episode 13 of the Rare Enough Podcast, where we have the privilege of hosting Colin Gerner, the CEO and co-founder of StacheStrong. This episode is set to …

Episode 20 of the Rare Enough Podcast: Doug Burton, MD

Episode 19 of the Rare Enough Podcast: Matt Anthony

2024 SNO Conference Recap

Written by Ross Gregory, Head for the Cure Staff Member The Society for Neuro-Oncology (SNO) Annual Conference in Houston this November brought together a vibrant community of researchers, clinicians, innovators, and advocacy groups passionate about …

About Recurrent Glioblastoma and the ReSPECT-GBM Clinical Trial

Recurrent glioblastoma, sometimes referred to as glioblastoma multiforme or simplyGBM, stands as one of the most aggressive brain tumors known to medical science. Itis a malignancy that relentlessly invades the brain, presenting a formidable challengefor …

Patient Stories

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May 2025 Ambassador Spotlight – Lisa Joerling

Written by Lisa Joerling My brain tumor journey began 11 years ago when I was diagnosed with a ganglioglioma brain tumor at just 19 years old. I was a sophomore at K-State and was home …

Episode 20 of the Rare Enough Podcast: Doug Burton, MD

The Role of OT in the Rehabilitation of Brain Tumor Patients

Occupational therapy (OT) helps brain tumor patients do the tasks they need or want to do to get through the day when faced with physical, cognitive, or emotional changes. OT takes a big-picture view of …

November 2024 Ambassador Spotlight – Erin Gaffney

Written by Erin Gaffney I’ve been fortunate to serve as an ambassador for several organizations. I joined the Executive Leadership Committee for the American Heart Association to raise awareness for heart disease. I participated in …

Episode 17 of the Rare Enough Podcast: Featuring Brian & Emily Godawski

Episode 14 of the Rare Enough Podcast: Featuring Michael & Vanessa Hugo

The Importance of Prioritizing Yourself as a Person Over Your Identity as a Patient

In the journey of facing a medical condition, it’s easy to let the label of “patient” overshadow our sense of self. Whether it’s a chronic illness, a sudden diagnosis, or a long-term treatment plan, the identity of being a patient can consume our thoughts and actions. However, it’s crucial to recognize the importance of prioritizing ourselves as individuals over our identity as patients. Here’s why:Preserving Self-Worth: Being a patient doesn’t define your worth as a person. It’s essential to maintain a healthy sense of self-worth independent of your medical condition. Remembering your talents, strengths, and qualities can help you maintain …

Embracing My New Patient Identity

The thought of embracing my new identity as a brain tumor patient was a daunting journey filled with uncertainties and challenges. However, it was essential to remember that my identity is not solely defined by my medical condition. While it undoubtedly plays a significant role in my life, it doesn’t overshadow the other aspects of who I am as a person. Here are some steps that helped me navigate and embrace my new identity:Acknowledge Your Feelings: It’s okay to feel a range of emotions, including fear, anger, sadness, and even relief.