Pediatric Brain Tumor Foundation

Today marks the first day of #BrainTumorAwarenessMonth, an important time of year to call attention to brain tumors and the unique challenges patients face. As part of the Pediatric Brain Tumor Foundation’s continued commitment to make children with brain tumors, survivors and their families a national priority, we are excited to welcome neurosurgeon and CNN chief medical correspondent Dr. Sanjay Gupta to our Board of Directors. ?Dr. Gupta brings extensive clinical, research and journalism experience, including as associate chief of Grady Health System's neurosurgery service, associate professor of?neurosurgery?at the?Emory University School of Medicine's, and as CNN’s chief medical correspondent, to the Pediatric Brain Tumor Foundation community, and we look forward to the many ways he will help drive forward our mission as a valuable and expert advocate for pediatric brain tumor patients, survivors, and their families.? Read the full announcement at https://lnkd.in/eKJCAM85, including quotes from Dr. Gupta, PBTF President and CEO Courtney Davies, and Board Chair Jeffrey Gelfand, and join us in warmly welcoming Dr. Gupta to the Pediatric Brain Tumor Foundation community! #CNN #nonprofitnews #philanthropy

EN ESPA?OL: En el complejo camino de enfrentar un diagnóstico de tumor cerebral pediátrico, contar con información clara y confiable en tu idioma preferido es esencial. La Pediatric Brain Tumor Foundation reconoce esta necesidad, y nos emociona anunciar la disponibilidad de 10 seminarios web informativos en espa?ol en nuestro canal de YouTube.Estos seminarios cubren temas clave como el diagnóstico, las opciones de tratamiento, la supervivencia y el bienestar emocional, todos presentados por expertos con experiencia. Nuestro objetivo es asegurarnos de que recibas apoyo en cada paso de tu camino. Para explorar estos seminarios, visita: https://lnkd.in/dQrH-d7Q tienes preguntas o necesitas apoyo adicional, puedes comunicarte con Alex Henderson, Gerente de Apoyo Familiar Bilingüe, al correo [email protected]. IN ENGLISH: In the complex journey of navigating a pediatric brain tumor diagnosis, having access to trustworthy and clear information in your preferred language is essential. The Pediatric Brain Tumor Foundation recognizes this, and we're thrilled to announce the availability of 10 informative webinars in Spanish on our YouTube channel. These webinars cover key topics such as diagnosis, treatment options, survivorship, and emotional well-being, all brought to you by seasoned experts. Our goal is to ensure that you're supported every step of the way on your journey. To explore these webinars, visit https://lnkd.in/d7r6KXXQ. For any questions or additional support, you can reach out to Bilingual Family Support Manager Alex Henderson at [email protected].

Our webinar "When Trauma and Grief Intersect: EMDR Strategies for Bereaved Families" is starting soon, and there's still time to register! This session will explore how EMDR techniques can provide meaningful support and healing for families coping with loss of a child due to brain cancer. Whether you're a parent or someone looking to understand this approach better, this webinar offers valuable insights. Register now at curethekids.org/webinar

Seizures can be an early indicator of a pediatric brain tumor and are also a common side effect of treatment. They may occur as isolated incidents or develop into a recurring condition. When seizures become frequent, a diagnosis of epilepsy may follow. For families, friends, and caregivers, understanding seizure first aid is crucial. Being prepared can make a significant difference during critical and sometimes scary moments. On this #EpilepsyAwarenessDay, we encourage you to watch the replay of our Seizure First Aid Ready webinar presented by The Epilepsy Foundation. The session covers seizures, epilepsy, and practical steps to recognize and assist someone experiencing a seizure. Empower yourself with knowledge and be ready to help when it matters most: https://lnkd.in/dZ-vWgj7

When Louis was just five years old, a diagnosis of low-grade glioma in his cerebellum turned his family's world upside down. After several months of monitoring, Louis underwent surgery to successfully remove his tumor in July 2024. Today, he is a lively first grader with a passion for sports, reading, camping, building Legos and watching Formula One. A significant part of Louis' journey was finding connection and community with the Pediatric Brain Tumor Foundation. “Get in touch with the Pediatric Brain Tumor Foundation as soon as possible," Louis' dad says. "While support from family and friends is important, they’re often just as bewildered and scared as you are. Having a knowledgeable organization like PBTF in your corner makes a huge difference. They are there for you when you need it – and even when you don’t realize you need it.” Now, Louis' family is committed to living fully and helping others navigate similar paths. They share their story to encourage families facing pediatric brain tumor diagnoses to reach out and find support from communities like PBTF. Read more about Louis' story and how PBTF became an important part of their support system at https://lnkd.in/ePBQ6qPn

In 1999, nine-year-old Robbie was a lively and energetic child who loved playing iceless hockey and wrestling. But when his mother, Cathi, noticed concerning changes in his behavior and worsening symptoms, she trusted her instincts that something was wrong. A CT scan soon confirmed their worst fears—a diagnosis of medulloblastoma, an aggressive brain tumor. The cancer had already spread throughout Robbie’s brain and down his spine, requiring urgent surgery and forever altering the course of their family’s lives. Robbie underwent surgery and an aggressive treatment plan. While life-saving, it left him with complex long-term effects impacting his vision, hearing, and overall health. Despite these challenges, now 35 years later, Robbie has found joy and fulfillment in his work and his passion for building intricate Lego sets, particularly Star Wars-themed ones. His story highlights the often-hidden struggles childhood cancer survivors face, showing that survival is just the beginning of a lifelong journey. With the support of communities like the Pediatric Brain Tumor Foundation, Robbie continues to move forward, sharing his experiences to raise awareness about the enduring impact of brain tumors. Read the Robbie’s full story at: https://lnkd.in/eCF8Angj

Don't forget to register for our upcoming webinar – When Trauma and Grief Intersect: EMDR Strategies for Bereaved Families Healing from grief and trauma is a deeply personal journey. Join next week for a special webinar designed for bereaved parents and caregivers who have lost a child to brain cancer, and the healthcare professionals who support them. This session will explore?Eye Movement Desensitization and Reprocessing (EMDR),?a therapy that helps participants process difficult memories through?bilateral stimulation—guided eye movements, auditory tones, and/or tactile taps—while talking through traumatic events. ???Thursday, March 27 ??1 PM ET | 10 AM PT ???Free, but registration is required Led by?Olivia Lynch, MS, LPC, National Director of EMDR Services at Newport Healthcare. Don't miss this opportunity to learn about this powerful approach to trauma and grief.?Register now at curethekids.org/webinar

PBTF board member @Katie Bernard’s unwavering advocacy for children with brain cancer, even in the midst of profound personal loss, is truly inspiring. In her post below, she shares her late son Alex’s powerful documentary and a heartfelt call for greater awareness and funding.

Missed our recent webinar on scanxiety? Now’s your chance to catch up. Learn from PBTF Family Support Manager and Child Life Specialist Jenn Kelley and Dr. Danielle Chambers as they discuss the causes and triggers of scanxiety, practical coping strategies to manage it, and the resources available to help patients and their families. Watch the full webinar anytime on YouTube: https://lnkd.in/e7JYr7vM

In 2008, Carole and Chren, a couple devoted to fostering "hard-to-place teenagers", welcomed 17-year-old Tammy into their family. Tammy had endured more hardship than most her age, yet radiated kindness and resilience. That summer, however, her life took a sudden turn when doctors discovered the cause of her seizures: an aggressive oligoastrocytoma brain tumor. Despite the weight of her diagnosis, Tammy faced it with positivity and an infectious sense of humor. After a year of chemotherapy, Tammy was announced cancer-free. She went on to graduate high school, work at Disneyland, and join the advisory council at CHOC, all while cherishing every moment with her loved ones. However, Tammy's journey took another turn when her tumor returned in 2014. Choosing to forego further treatment, she decided to spend her days surrounded by the love and comfort of her family and friends. Even in passing, Tammy's impact endured. Her ashes now contribute to an eco-friendly ocean reef. Tammy leaves behind a legacy of generosity and selflessness, inspiring all who knew her to live boldly and enjoy every moment. Read more about Tammy's journey: https://lnkd.in/egiMu-9h