Pediatric Brain Tumor Foundation

On average, children and adolescents diagnosed with brain tumors are living longer. Because of this, it's more important than ever that patients, family members and caregivers understand palliative care.

There are many misconceptions about palliative care, including that it’s the same as hospice care. Although both share similarities, several differences set palliative and hospice care apart. You can learn more about palliative care and its importance in your child's care plan by registering for our upcoming webinar on August 22nd at 1:30 PM ET / 10:30 AM PT at curethekids.org/webinar.

Earlier this year, two-year-old Ian's mother noticed that he consistently walked with his head tilted at an odd angle. Sensing that something was wrong, she promptly scheduled an appointment with his pediatrician. This led to a visit to the emergency room for a CT scan, followed by an MRI that revealed a golf-ball-sized pilocytic astrocytoma tumor at the back of his brain.

Thanks to the swift actions of Ian's family, the tumor was successfully removed during surgery, and remarkably, he was able to walk normally without assistance just four days later when he was discharged from the hospital.

Ian's mother emphasizes the critical importance of parents being aware of any changes in their child's appearance or behavior. “Pay attention every day,” she advises. “Be aware of what’s going on with your children. If you notice something isn’t right, take them to the pediatrician. Ian is where he is today because we caught his brain tumor early.”

Read more about Ian and his family's journey at https://curethekids.org/story/swift-action-rapid-recovery-ian/

As we cheer for Team USA in the Olympics, we're also cheering for Kannapolis Cannon Ballers' General Manager and longtime Pediatric Brain Tumor Foundation supporter, Matt Millward, who is currently in Paris raising awareness and money to support kids with brain tumors. Each gold medal won by Team USA translates into funds that directly support the Pediatric Brain Tumor Foundation's mission to provide families with critical resources and accelerate research for a cure and the Kannapolis Cannon Ballers' annual Starry Night game, rallying the community together for a powerful cause.

Thanks to Matt's passion and dedication, he has already surpassed his $4,000 goal, but the games aren't over yet! Visit https://charity.pledgeit.org/f/XZ0YWj1WAY to support his campaign and stay up to date with his adventures during the .

When a child finishes treatment for a brain tumor, the journey has only begun. Although this journey can feel overwhelming, the Pediatric Brain Tumor Foundation's Life After Diagnosis resource center offers parents, caregivers, and survivors the tools and support they need to plan for the months and years ahead. Discover a variety of resources covering essential topics and discover a community that can understand the challenges in your journey.

Visit the Life After Diagnosis Resource Center today at https://curethekids.org/resource/life-after-a-brain-tumor-diagnosis/

Navigating a child's brain tumor diagnosis can be a deeply emotional and challenging experience for parents and caregivers. Understanding palliative care and its benefits can greatly enhance the support, education and comfort a family receives. Join us for our next webinar on Thursday, August 22, at 1:30 PM ET/10:30 AM PT to learn about the differences between palliative care and hospice and how palliative care can be a vital part of your child's care.

We will be joined by pediatric psychologist Dr. Chrissy Salley of Courageous Parents Network and parents Anne and Nils who will both provide valuable insights and perspectives on the importance of palliative care.

Register today at curethekids.org/webinar. Thanks to the generosity of donors, this webinar is free.

As the NFL's Pro Football Hall of Fame Enshrinement Week kicks off tomorrow, we'd like to congratulate this year's class, who join legendary players like Pediatric Brain Tumor Foundation Ambassador and San Francisco 49ers' defensive lineman, Bryant Young.

Two years ago, during his induction into the Pro Football Hall of Fame, Bryant invited the Pediatric Brain Tumor Foundation and brain tumor survivor Zion to share in the moment. This event was not solely about his accomplishments; it served as a poignant tribute to his son, Colby, who passed away from a brain tumor at just 15 years old.

Throughout their family's journey, Bryant, his wife Kristin, and Colby's siblings showed incredible strength and unity. Colby’s siblings created shirts designed with a Superman-themed logo featuring a bold "C" at its center. One of these shirts is now displayed alongside Bryant’s memorabilia in his locker at the Pro Football Hall of Fame.

Colby's legacy continues to inspire countless families facing this life-changing diagnosis and motivates supporters to fuel efforts to find a cure for pediatric brain cancer. You can watch a portion of Bryant's speech, where he shares his family’s experience with childhood brain cancer, at https://curethekids.org/update/pro-football-hall-of-famer-and-pbtf-special-ambassador-bryant-young-inspires-international-audience-with-tribute-to-son-colby/

August is National Make-A-Will Month and we've partnered with FreeWill to help you get started with making these important plans. When you choose to leave a gift in your will to the Pediatric Brain Tumor Foundation, you become a beacon of hope for countless families facing the daunting challenges of childhood brain cancer.

Free Will makes it easier than ever to start your will and protect the people, things and causes you love. Visit https://www.freewill.com/pediatricbraintumorfoundation to learn more about how you can create a brighter future for children with brain tumors.

We are incredibly grateful to United States Cold Storage, Inc. McClellan Park for selecting the Pediatric Brain Tumor Foundation to support during their annual Connect for a Cause campaign! A special thanks goes to Tim Gould and the Throttle Nutz riding group, who have participated in the Ride for Kids events each year, demonstrating unwavering dedication to raising critical funds and awareness for children with brain tumors and their families.

After learning about the significant funding gap in pediatric brain tumor research, their employees were inspired to take action, aiming to support parents, caregivers, and families affected by this devastating disease. Eleven passionate employees have already launched their own fundraising campaigns, and with an upcoming vendor campaign on the horizon, they are well on their way to achieving their $15K goal!

You can support US Cold Storage by donating at https://team.curethekids.org/campaign/us-cold-storage-connect-for-a-cause/c599317,

Thank you for your support, dedication, and passion for making a difference! Together, we can end childhood brain cancer!

When Graham, a sweet kid who was usually full of energy and loved to eat, started becoming a picky eater and showed no interest in opening his presents on Christmas Day, his parents immediately knew something was wrong. On Christmas morning of 2022, Graham was diagnosed with pilocytic astrocytoma.

“I struggled with being confident enough to advocate for Graham when I knew the provider wasn’t working out,” says Graham's mother, Abbie. “But then I realized I could vocalize my concerns and make a change." Initially overwhelmed by so much new information and challenges, Graham's family found the resources and tools they needed through the Pediatric Brain Tumor Foundation's Starfolio Resource Notebook, designed for newly diagnosed families.

Now one and half years after diagnosis, Graham's parents have found their voice to advocate for Graham to ensure he receives the care and attention he deserves. As Graham’s journey continues, his parents continue to advocate for Graham’s and their family’s needs, including appropriate medical care, insurance coverage, and both physical and emotional support. Read more about Graham and his family at https://curethekids.org/story/advocating-for-graham/

After Marin was diagnosed with a low-grade glioma, her family was inspired to help other children facing brain tumors by organizing an annual Tumor Trot. This year's event brought together 170 passionate individuals eager to show their support for Marin, her family, and countless others facing pediatric brain tumors. Together, they raised over $17,000 to fund research focused on improving treatments and outcomes for children, with the ultimate goal of finding a cure.

We are deeply grateful to Marin's family and their community for their unwavering dedication, showcasing the incredible power of unity when we rally for a cause greater than ourselves.

Read the full story about Marin's journey and this year's Tumor Trot at https://curethekids.org/story/community-spotlight-tumor-trot-2024/. We're excited to see how the community will come together for next year's event!

There are only three hours left until our town hall begins! Don't miss this critical discussion with Senator Chuck Grassley and other key panelists on the latest on the Accelerating Access to Care Act and how it will improve access to quality care across state lines for children with brain tumors and their families, followed by a live Q&A session.

Haven't registered yet? Go to curethekids.org/webinar to secure your spot now.

🚨 Only 2 days left to register! Join us on July 24th at 3 p.m. ET / 12 PM ET for our town hall featuring Senator Chuck Grassley. Learn how the Accelerating Kids’ Access to Care Act will improve and simplify healthcare access for children with brain tumors who must travel across state lines to receive the care they deserve.

Attendees will be able to ask questions directly to the panelists after the presentation and learn how they can support this legislation's journey through Congress. Register today at curethekids.org/webinar and learn how you can advocate for important childhood legislation like this.

We are grateful to The Leukemia & Lymphoma Society and National Brain Tumor Society for co-hosting this event with us.

🚨 Only 2 days left to register! Join us on July 24th at 3 p.m. ET / 12 PM ET for our town hall featuring Senator Chuck Grassley. Learn how the Accelerating Kids’ Access to Care Act will improve and simplify healthcare access for children with brain tumors who must travel across state lines to receive the care they deserve.

Attendees will be able to ask questions directly to the panelists after the presentation and learn how they can support this legislation's journey through Congress. Register today at curethekids.org/webinar and learn how you can advocate for important childhood legislation like this.

We are grateful to The Leukemia & Lymphoma Society and National Brain Tumor Society for co-hosting this event with us.

Thanks to passionate advocates like 12-year-old brain tumor survivor Charlie, who testified before Congress to urge support for the Accelerating Kids’ Access to Care Act, vital legislation is advancing that can improve the futures of children with brain cancer. Charlie's dedication to advocating for this bill is rooted in his own experience of traveling across state lines for specialized care, giving him firsthand insight into the bill's critical importance for countless families facing similar challenges.

You can join us on July 24 at 3 p.m. ET / 12 p.m. PT for our upcoming town hall to learn how you can become an advocate and help enhance healthcare access for children nationwide. Register here: curethekids.org/webinar.

⏰ There's less than one week left to register for our upcoming town hall! Join us on July 24th at 3 PM ET / 12 PM PT to learn how you can support this critical legislation that will improve access for children with complex medical conditions who require specialized care across state lines. Attendees will hear important insights about this bill from Senator Chuck Grassley and other key panelists and have the opportunity to ask questions after the presentation. Secure your spot today at curethekids.org/webinar.

Thank you to The Leukemia & Lymphoma Society and the National Brain Tumor Society for co-hosting this event with us.

Join us today for to learn about one of the deadliest pediatric brain tumors - glioblastoma multiforme (GBM). This aggressive tumor is often resistant to current treatments, making it crucial to raise awareness about its devastating impact on families. By highlighting the urgent need for research funding, we can drive progress towards better treatments and outcomes for children. Be sure to share this post with four key facts about GBMs to educate your community.

If your child has been diagnosed with a brain tumor, know that our community is here to support you. Feel free to email us anytime at [email protected].

When your child is diagnosed with a brain tumor, it’s normal to feel overwhelmed by so much new information. The Pediatric Brain Tumor Foundation is here to help your family through every step of the journey, from diagnosis to life after treatment. Our Newly Diagnosed Resource Notebook was created with the expertise of leading medical professionals and the invaluable insights of families who have been through similar experiences, designed to help you navigate this difficult time with confidence and knowledge.

Download the Newly Diagnosed Resource Notebook today and empower yourself with the information and support you need to make the best decisions for your child's health: https://curethekids.org/resource/support-for-families/educational-resources/newly-diagnosed-resource-notebook/

The grief that comes from losing a child to a brain tumor can feel incredibly overwhelming and immense, but know that you don’t have to go through it alone. There's still time to join our online Bereavement Support Group, a safe space to share, grieve, and find solace with others who have also experienced losing a child to a brain tumor. Join us every other Tuesday starting July 16 and discover resources and tools designed specifically for bereaved families. Register now at https://curethekids.org/resource/support-for-families/online-support-groups/bereavement-support-groups/.

Thanks to donors’ support, this program is free for all families.

This year's Mason's Twenty-Fore Straight was another hole-in-one, as the community came together for a 24-hour golf marathon to raise critical funds for families facing brain cancer. Hosted annually by TPC Sugarloaf's team, this event honors Mason, who passed away from a pediatric brain tumor and had a love for sports and the outdoors.
We are extremely grateful for the unwavering dedication and support of every golfer, family, and fundraiser who made the event a success. From goodie bags filled with glow-in-the-dark golf balls to midnight treats from Waffle House and the Kona Ice truck, every moment was filled with togetherness and joy.

We also want to give a special shoutout to Mason's family for creating this meaningful event and to Aden's family, who fundraise and participate each year in memory of their son Aden, who also passed away from a brain tumor. Thanks to the funds raised during this event, we can continue to drive research toward a future free of pediatric brain tumors.

Navigating the loss of a child or sibling to a pediatric brain tumor can feel incredibly overwhelming and isolating. But know that you don't have to face bereavement alone. As continues, the Pediatric Brain Tumor Foundation is here to provide you and your family with resources like our peer-to-peer mentoring program that matches parents, caregivers, siblings, and others affected with mentors who have experienced similar challenges.

Become a part of this supportive community that offers empathy, personal connection, and a safe space to share your emotions. Learn more about becoming a mentor or joining our program at https://curethekids.org/resource/support-for-families/peer-to-peer-mentoring/

We had an incredible time at connecting with clinicians, researchers, passionate advocates, and more. We're so grateful for the collaboration with Martin and Katie who spearheaded the Everest in the Alps fundraiser which was inspired by their son, "Siren." Together, we look forward to raising awareness and funds to help children with DLGNT worldwide.

From Saturday's kick-off celebration with partners like Children's Brain Tumor Network and Dana-Farber Cancer Institute to Sunday's low-grade glioma session, we look forward to future collaborations that will bring us closer to a world without pediatric brain tumors!

Join us on July 24 at 3 p.m. ET for an important Town Hall featuring Senator Chuck Grassley. Together with other lead sponsors, we will discuss the Accelerating Kids’ Access to Care Act, a vital piece of legislation that aims to improve and simplify out-of-state medical care and processes for children with complex medical conditions like pediatric brain cancer who need to travel across state lines for care. This act recently passed unanimously through the House’s Energy and Commerce Committee, thanks to the relentless efforts of childhood cancer advocates like Charlie who testified to the U.S. Senate.

Don't miss this chance to be part of this crucial conversation and learn how you can support this legislation's journey through Congress. Register now at curethekids.org/webinar.

Today marks the beginning of . Bereavement can be immense, overwhelming and isolating, but know that you don't have to face these feelings alone. Although a family should never be faced with saying goodbye to their child, the Pediatric Brain Tumor Foundation community is here to support you today and every day.

If you've lost a child due to a pediatric brain tumor and need support, please don't hesitate to reach out to our family support team anytime at [email protected] or visit https://curethekids.org/resource/support-for-families/navigating-bereavement/ to find resources and connect with others who are walking a similar path.

is underway and we are thrilled to be part of this incredible event, connecting with dedicated clinicians, researchers, and advocates from around the world.

This evening, the Pediatric Brain Tumor Foundation is proud to sponsor a session dedicated to improving treatment and outcomes for children facing low-grade gliomas. Join us from 3-5 PM to hear from experts in the field and learn more and engage in meaningful discussions that could shape the future for children facing pediatric low-grade gliomas.

We look forward to seeing you there!

Life after treatment for a pediatric brain tumor is complex and it can be difficult for survivors and their families to know where to turn to navigate the road ahead.

The Pediatric Brain Tumor Foundation is dedicated to providing critical resources that help survivors and their loved ones feel empowered and supported. Your donation today will support families, while accelerating research into safer ways to diagnose and treat pediatric brain tumors. Make your gift today at curethekids.org/give.