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

Gretchen’s journey began at the age of 4 when she was diagnosed with an arachnoid cyst—a fluid-filled sac on her brain. By the time she was 5, she became the fifth patient to undergo an innovative treatment that proved successful. Since then, she has been passionate about raising awareness of the profound impact brain tumors can have on children and their families. “I finally found my community, and it was life-changing,” reflects Gretchen, recalling her discovery of the Pediatric Brain Tumor Foundation and her participation in a Ride for Kids event in 2017, when she was just 16. “It took me almost 12 years to connect with people I could genuinely talk to about my diagnosis and treatment, and my parents felt the same way. Meeting these families for the first time created an immediate bond.” Now 23, Gretchen’s commitment to advocating for increased funding and research on pediatric brain tumors has led to pageant competitions and outspoken advocacy for the PBTF. Most recently, she took PBTF’s mission to the stage of the Miss Virginia pageant. To read more about Gretchen’s story and her advocacy efforts, visit https://lnkd.in/eHkwafMc.

When a child learns that their sibling has been diagnosed with a brain tumor, they may experience a whirlwind of emotions and questions. These feelings can be complex and may change over time. Engaging in open conversations with your child about the situation and allowing them space to express their thoughts and emotions can help them navigate the changes happening in their lives. While these discussions can be challenging, the Pediatric Brain Tumor Foundation is here with five tips to support families during this difficult conversation. Discover more about supporting siblings during the pediatric brain cancer journey at https://lnkd.in/euAqf_fj.

Election season is upon us, and your voice has never been more crucial for children with brain tumors. The Pediatric Brain Tumor Foundation’s advocacy program is at the forefront of supporting the passage of vital legislation like the Accelerating Kids’ Access to Care Act, which aims to improve the lives of children and their families who must travel across state lines for the care they deserve. We can’t do it alone—we need your support to make sure that the pediatric brain tumor community has legislative allies that can make these changes a reality. Make your voice heard! Schedule a 30-minute meeting with our Director of Advocacy, Mike Henry at https://lnkd.in/dhMCfV2c to discover how you can play a pivotal role in advocating for children who need it most.

We are thrilled to welcome Katie Bernard, Vice President of New Ventures at Parex Resources, to the Pediatric Brain Tumor Foundation's Board of Directors! Katie's steadfast commitment to our mission is profoundly personal; as a parent of a child with a rare brain tumor, she recognizes the critical need for advancing research and family support resources so families like hers can find the answers they need. Her passion is evident in initiatives such as her and her husband's "Everest in the Alps" challenge, an extraordinary journey through the Swiss Alps, and their collaboration with the Energy Council to raise international awareness, collaboration and funds for pediatric brain tumor research. Katie brings a wealth of experience, insights, and inspiring leadership to our board. We look forward to collaborating with her to elevate the Pediatric Brain Tumor Foundation to the next level while continuing to serve as a lifeline for families nationwide. Please join us in welcoming Katie and acknowledging her dedication to bringing hope and a brighter future for children with brain tumors and their families.

Today is #WorldMentalHealthDay, serving as a reminder of the importance of caring for our mental health, especially during the emotional challenges that come with a child’s brain tumor diagnosis. As a co-pilot in your child’s life, it is essential to understand and validate their big emotions. Although this isn’t an easy task, it is an extremely important tool that can help you connect and understand your child on a deeper level. In this clip, Dr. Matt offers valuable insights on being an active listener and providing the support your child needs. Remember, you are not alone. The Pediatric Brain Tumor Foundation provides many resources to support families at every stage of the childhood brain cancer journey. Visit https://lnkd.in/gM9EfQUP to find the community and support you need.

Chris had a passion for baseball from a young age, impressing scouts from various organizations with his dedication and talent for the sport. However, his world turned upside down when he was diagnosed with glioblastoma, a highly aggressive form of brain cancer, and given just two months to live at 17 years old. Although faced with a whirlwind of surgeries and challenges, a glimmer of hope emerged after seeking treatment at another hospital where the team was able to perform a life-saving surgery, restoring Chris to nearly 100% health. Today, Chris is thriving and works with the San Francisco Giants to share his story and raise awareness for pediatric brain tumors while dedicating his time to connect with cancer patients to offer the same hope and encouragement that his family gave him. Read more about Chris's journey at https://lnkd.in/eq4yGWwW.

Our recent webinar featured Dr. Matthew “Matt” Zakreski, who describes himself as “in the business of hope.” He helped define the concept of hope while guiding families on how to apply it meaningfully as they navigate the challenges of childhood brain cancer. To learn more from Dr. Matt about the concept of “hope,” watch the full webinar any time by visiting https://lnkd.in/eJC4vGuf.

Mark your calendar for February 27-28, 2025 so you can be a part of the 15th Annual Alliance for Childhood Cancer Action Days. Action Days brings the childhood cancer community together and so can unite your voices to speak directly with members of your local Congress to advocate for the most pressing issues that families navigating childhood cancer face daily. Being a part of this initiative ensures that the voices of children with cancer are heard loud and clear on Capitol Hill. Register today at https://lnkd.in/ePwiFnKs and we look forward to working alongside you and so many others advocating for change for children and their families.

In 2019, after sustaining a concussion on the playground, doctors at Birmingham Children's Hospital made a startling discovery: Krystalyn had a tumor the size of a golf ball on the right side of her brain. Although it was benign, the tumor unexpectedly grew in 2023 and was successfully removed in June of that same year. However, that wasn't the end of Krystalyn's journey. By June of this year, she began exhibiting concerning symptoms, leading her to another hospital visit where doctors identified five additional benign tumors, all inoperable. Krystalyn was ready to approach this next chapter head-on with a positive attitude, becoming a beacon of light for her family as they navigated their own challenges, supported by resources from the Pediatric Brain Tumor Foundation. “This can really take a toll on the whole family,” her mother explains. “For a long time, people asked how Krystalyn was doing, which was wonderful, but fewer people thought to ask about her 9-year-old brother Keegan or her dad, Ty. I realized they needed support too.” To read more about Krystalyn's journey, visit https://lnkd.in/eXrESJ8Z.