Rare Enough

Send a text In this episode, Abraham Gonzales shares his journey through two unimaginable tragedies: losing his wife, Mari, to GBM and surviving the Robb Elementary School tragedy. His story is one of caregiving, heartbreak, and remarkable resilience. Content warning: This episode includes discussion of grief, loss, and traumatic events that may be difficult for some listeners. Please listen with...

Send a text Renowned sportscaster Danny Parkins joins host DJ Stewart to share how his career behind the microphone has become a force for change far beyond sports. Danny reflects on his early days in broadcasting, the origins of his first radiothon that has since raised nearly $2 million for brain cancer research, and partnerships with the Chicago Cubs, Brain Up, and Head for the Cure that contin...

Send a text In this episode of the Rare Enough Podcast, host DJ Stewart sits down with Dr. Phillip “Jay” Storm, Chief of Neurosurgery at The Children’s Hospital of Philadelphia and a leader in pediatric brain tumor research. Together, they explore why pediatric brain tumors are not just “smaller versions” of adult tumors, the unique challenges they present, and the groundbreaking work of the Child...

Send a text Our newest episode of the Rare Enough Podcast features Kansas City’s beloved meteorologist, cancer survivor, and passionate advocate for the brain cancer community, Gary Lezak. In this inspiring conversation, Gary opens up about his personal cancer journey and how it led him to partner with Head for the Cure, helping raise awareness and hope for those impacted by brain cancer. Support...

Send a text In this episode, DJ talks with Unsha Bakker, a dedicated nurse navigator, about her vital role in guiding patients and caregivers through brain tumor diagnoses. She shares her journey into nursing, the barriers underserved communities face in accessing care, and the human side of nursing, emphasizing the importance of mental health support and self-care for both patients and providers....

Send a text In this episode we’re joined by filmmaker Ryan Lovell to talk about how Rare Enough came to life. From the very first spark of an idea to the documentary that changed everything, Ryan shares the inspiration behind the stories and the people who shaped them. We also dive into the making of A Beautiful Brain,  a powerful film honoring caregivers, grief, and the beauty found in resilience...

Send a text This episode we sit down with Dr. Akhavan, Physician Scientist at The University of Kansas Cancer Center, to dive deep into the promising world of CAR T-cell therapy. Dr. Akhavan breaks down how this innovative treatment is being applied in the brain cancer space, what patients and families need to understand about its potential and limitations, and why quality of life remains a critic...

Send a text In this episode, we sit down with Trishla to explore the world of neuro-oncology research. Trishla shares how meaningful moments shaped her passion for clinical trials and patient care. We discuss the challenges around access, the need for more research in brain cancer, and the options available to patients and families.  Support the show Rare Enough is a podcast powered by Head for th...

Send a text In episode 26 of the Rare Enough podcast , Drew Houts joins us to share his journey as a caregiver to his wife, Julie, during her fight with glioblastoma. Through the challenges they faced together, Drew discovered the gaps in support for patients and caregivers and turned that insight into action. He then helped lead the creation of Join Your Path to Hope  (JPH) , a personalized tool...

Send a text May is Brain Tumor Awareness Month, and in this episode, we share the story of Erin Gaffney, an incredible Oligodendroglioma fighter who gets real about her journey, including undergoing an awake craniotomy, navigating the weight of survivor’s guilt, and learning to give herself grace through it all. Listen along and be inspired by her strength and vulnerability. Support the show Rare...

Send a text In this episode we sit down with firefighter Zach Toole, who shares his heartfelt journey as a caregiver to his mother during her battle with glioblastoma. Though she has since passed, Zach continues to honor her legacy by fiercely advocating for brain cancer awareness. Tune in as he reflects on the challenges of caregiving, the strength he found in his role, and how he now carries her...

Send a text As we recognize April as Occupational Therapy month, we welcome Ally Ponticello, a licensed Occupational Therapist and caregiver to her mom, who is battling glioblastoma. Ally shares invaluable insights into the world of occupational therapy, offering practical tips and simple strategies to make daily life easier—whether you're a patient, caregiver, or just looking to improve your...

Send a text This mini episode features Ray and Melissa Lambert—a couple with an extraordinary story. Both diagnosed with brain tumors, they’ve each taken on the dual role of patient and caregiver, supporting one another through surgeries, treatment, and recovery. Support the show Rare Enough is a podcast powered by Head for the Cure , sharing real stories of resilience, hope, and community from th...

Send a text This month, we sit down with Aaron Closson, whose battle with brain cancer led him on an unexpected and meaningful path. After facing his own diagnosis, Aaron found a calling in helping others navigate the emotional and spiritual challenges that come with a life-changing illness. Now serving as a chaplain, he offers comfort, guidance, and hope to those on similar journeys. Support the...

Send a text In this mini episode, we’re joined by Jo Singleton, Team Captain for the Charleston community, as she shares the story behind Team Kyla and her dedication to raising brain cancer awareness. Jo opens up about what fuels her passion for advocacy, the impact of community-driven efforts, and how Team Kyla continues to honor a legacy while inspiring others. Support the show Rare Enough is a...

Send a text In this episode we welcome Dr. Na Tosha Gatson, Director of Neuro-Oncology & Professor of Neurology and Medicine at IU Health. A leader in the field, Dr. Gatson shares insights on advancements in neuro-oncology, the impact of brain tumors on women’s health, addressing health disparities, and the importance of quality-of-life care.  Support the show Rare Enough is a podcast powered...

Send a text In this mini episode of Rare Enough , Maggie Haynes, Director of Events at Head for the Cure, shares the secrets behind the "playbook" of organizing meaningful events that fuel hope, inspire action, and raise critical funds for brain cancer research. From 5Ks to special initiatives, Maggie discusses the passion, creativity, and strategy that turn each event into a powerful ex...

Send a text In this episode we interview Dr. Doug Burton, a renowned spine surgeon and Professor at the University of Kansas, who shares his transformative journey from physician to patient after his own brain cancer diagnosis. Dr. Burton reflects on how this experience reshaped his perspective on care and the patient-provider relationship. Support the show Rare Enough is a podcast powered by Head...

Send a text In the final Rare Enough Podcast episode of the year, we sit down with Matt Anthony, founder of Head for the Cure, to reflect on the journey from the foundation's early days to where it stands today. Join us as we celebrate the incredible successes of the 2024 event season, discuss the milestones achieved, and look ahead to the future of the organization. This heartfelt conversati...

Send a text In this episode, we have a heartfelt conversation with Luke Anderson, the son of Lori Stevens, who bravely fought but ultimately lost her battle with brain cancer.  Luke shares his personal journey and the creation of the Lori Project, an initiative dedicated to bringing awareness and support for navigating end-of-life care.  Join us as we learn how Luke's mission is making a diff...

Send a text In this episode we introduce Brian and Emily Godawski- an inspiring duo who faced brain cancer with unwavering resilience.  Brian, a brain cancer survivor, and Emily, his devoted caregiver, overcame immense challenges by embracing "faith over fear."  Their shared story offers hope and inspiration, showcasing the power of love, strength, and unwavering belief in each other.  ...

Send a text In honor of Childhood Brain Cancer Awareness Month, we introduce Kelly and Evie Fisher.  Kelly and Evie share the poignant and inspiring story of Allie, Kelly's daughter and Evie's little sister, who bravely battled brain cancer.  Through their journey, Kelly and Evie have shown remarkable strength and resilience, navigating their profound loss with courage.  They continue to...

Send a text Meet Simon Khagi, MD, Medical Director of Neuro-Oncology at Hoag Family Cancer Institute and a triple-board-certified oncologist.  He specializes in primary brain, spine, lung, and advanced skin cancers and has extensive experience with glioblastoma, astrocytoma, oligodendroglioma, meningioma, ependymoma, medulloblastoma, brain metastases, and rare brain tumors.   Support the show Rare...

Send a text This is a special anniversary episode celebrating the first year of the Rare Enough Podcast!  For our fourteenth episode, we introduce Michael and Vanessa Hugo!  The Hugo's are a patient and caregiver dynamic duo that work day in and day out on advocating for others in the brain cancer community.  Learn all about their journey with glioblastoma and how they have never given up.  S...

Send a text For this episode, we introduce Colin Gerner, the CEO and co-founder of StacheStrong, who is leading a dedicated fight against brain cancer. Under his leadership, StacheStrong has become a prominent force in raising awareness and funding for critical research, driven by a personal mission to transform lives and find a cure.   Support the show Rare Enough is a podcast powered by Head for...