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

A few weeks ago, we shared the inspiring story of Alyssa, a bright and energetic child who received the unexpected diagnosis of an inoperable brain tumor. Since her passing in 2017, Alyssa’s loving and generous spirit continues to shine through her family’s tradition of collecting gift cards in her memory, helping alleviate the financial burden of hospital stays for other families facing this devastating disease. This November during National Family Caregivers Month, we invite you to stand with us in support of the caregivers and families who give so much by donating at https://lnkd.in/eSe8BEDu. Together, we can light the way for those battling childhood brain cancer, providing the support they need during their journey.

Today is a day full of fun frights and spooky sights, but remember, it’s okay to feel scared. Just like our salsa-loving, roller-coaster-riding imaginary friend Pico de Gallo from the Imaginary Friend Society says, being scared is a natural part of life. No matter what challenges you might face during the cancer journey, remember that you’re stronger than you think. Watch Pico’s video for some unlikely wisdom about being scared and discover more from the Imaginary Friend Society at https://lnkd.in/dt9jUBCd

Audrey was only three and a half when she was diagnosed with a low grade glioma after her family brought her to the doctor due to severe neck pain and vomiting. A second opinion from a neurosurgeon raised significant concerns on how Audrey’s quality of life would be impacted if they opted for surgery. In search of support and insight, her mother, Becky, joined Facebook groups dedicated to low-grade glioma, connecting with other families within the Pediatric Brain Tumor Foundation community who had faced similar challenges. The response was overwhelming, leading her to a doctor in Tennessee who could perform an innovative procedure that would give Audrey the chance to live the life she deserved. With renewed hope, Audrey’s parents then encountered a significant obstacle—Medicaid refused to cover the out-of-state surgery. The red tape was delaying critical care, and for Audrey, every minute mattered. “It was devastating. We were running out of time, and the appeal process was dragging on,” Becky recalls. Faced with insurance complications, Becky and her husband Brett, alongside their friends and family, started a fundraising campaign to cover Audrey’s out-of-state surgery. Fortunately, the surgery was a success, and today, Audrey is a thriving five-year-old in kindergarten, running, playing, and enjoying all the things that a child should. Learn how advocacy and determination helped Audrey and her family get the care they needed at https://lnkd.in/ebpRTAfd.

Mylah was an exceptionally calm baby, so when her mother, KateLynn, noticed that the two-month-old wouldn’t stop crying back in January, she immediately knew something was wrong. After several doctor visits with no clear answers, an ultrasound revealed a large tumor on Mylah's cerebellum. A subsequent biopsy confirmed that Mylah had a rare, aggressive grade 4 embryonal tumor, requiring three rounds of intensive chemotherapy combined with three rounds of stem cell therapy. Due to her young age and the demanding treatment, Mylah had to remain in the hospital for four months, separated from family. Despite the numerous challenges Mylah and KateLynn faced, KateLynn found strength in the connections she made with other families at the hospital and the support she received from the Pediatric Brain Tumor Foundation. “I was terrified to open up to other families at the hospital, but once I did, I wished I’d done it sooner,” KateLynn reflects. “It’s an entire community experiencing similar challenges, and they understand what you’re going through better than anyone else. As a result, they know the right things to say. I never imagined I would consider the hospital community as family, but they’ve truly become that. While others move on with their lives, these families are here for us.” To learn more about Mylah and how KateLynn has navigated this complex journey, visit https://lnkd.in/dQsjFvmy.

Earlier this week, we covered some tips that can help make long hospital stays less difficult for the entire family. Today we thought we'd grab a friend to help expand on the topic! Meet Hank, the sweet, witty crab from the Imaginary Friend Society. He's here to offer a bit of advice for kids including practical suggestions on how to make their hospital room feel more like home and some good-natured observations like, “You never have to make your bed!” You can find more videos from the Imaginary Friend Society at https://lnkd.in/dt9jUBCd. The Imaginary Friend Society covers a variety of topics to help your child better understand the emotions and procedures they may face during their cancer journey.

When your child is diagnosed with a brain tumor, long hospital stays become a regular part of life. Emergency visits can be scary, and long hospital stays can be exhausting for the whole family. Being able to plan ahead can make them less upsetting for you, your child, and the rest of your family. The Pediatric Brain Tumor Foundation is here with a simple checklist that provides guidance on what to have, what to pack, and what to ask during hospital visits. If you or someone you know has been recently diagnosed with a brain tumor, you can find helpful tips like this and more by downloading a copy of our newly diagnosed resource notebook at https://lnkd.in/e7YTC_De .

A huge thank you to everyone who helped make the 20th anniversary of the Marsh McLennan Agency's Charity Classic event an incredible success! Thanks to the generous support of sponsors, donors, and the MMA community, nearly $500,000 was raised for the Butterfly Fund during this year's livestream event. Additionally, offices across the Southeast donated over $15,000 in gift cards to help families in need. Since its inception, MMA has united the insurance community to raise over $5.5 million for the Butterfly Fund, which provides essential financial assistance to families dealing with pediatric brain tumors. But the celebration doesn’t stop here! Save the date for Marsh McLennan Agency - Southeast's annual Cocktails & Cornhole event on October 22nd, where the community will come together again to celebrate our shared achievements and enjoy some friendly competition. Thank you to the MMA community for your ongoing support and partnership over the past 20 years. Together, we're creating a brighter future for children with brain tumors and their families!

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.