A seizure can be one of the first signs of a brain tumor. They are also one of the most common late-term side effects that pediatric brain tumor patients and survivors experience after treatment.

Having a seizure, or being with someone when they’re having a seizure, can be terrifying.  Because seizures can affect anyone, at any age, it’s important for everyone to understand what a seizure is and how to help someone having a seizure. And for caregivers and loved ones of a child with a brain tumor, it’s essential.

A seizure is a burst of uncontrolled electrical activity in the brain. It can happen once due to an acute cause, like medication. Or it can happen over and over. A person is diagnosed with epilepsy when they have recurring seizures.

During our recent webinar, Seizure First Aid Ready, Presented by The Epilepsy Foundation, Erin Fecske, a pediatric nurse practitioner in the Comprehensive Epilepsy Center at Children’s Mercy Kansas City, spoke with pediatric brain tumor survivors and patient families about seizures, epilepsy, the correct and incorrect steps for helping a person having a seizure, and when it’s necessary to call emergency services.

Watch this webinar on-demand to become seizure first aid ready, and read on for 3 tips to help someone when they’re having a seizure:

• Stay with the person until they are awake and alert.
  When someone is having a seizure, it’s critical to remain calm and speak calmly to the person during and after the seizure. Be sure to time the seizure from start to finish to determine if emergency assistance is needed.
• Ensure that the person is safe.
  Remove any obstacles or dangerous objects from the person having a seizure. Encourage people to step back and give the person ample room. It is always okay to ask someone else to stay with you for extra help.
• If the person is not awake & alert, turn them on their side.
  Ensure that the person is as comfortable as possible and keep their airway clear. Loosen tight clothes around the neck, if applicable. Make sure to lay the person down on the floor on their side with their mouth pointing at the ground and put something small and soft under their head. Call emergency services if the seizure lasts longer than 5 minutes.

Thank you to pediatric nurse practitioner Erin Fecske and The Epilepsy Foundation for presenting this webinar to the pediatric brain tumor community. To learn more about The Epilepsy Foundation, recognizing seizures, and seizure first aid, visit epilepsy.com/recognition.

The Pediatric Brain Tumor Foundation’s webinar series helps ease the social isolation and emotional distress families face after a child’s brain cancer diagnosis. These virtual events feature carefully chosen experts and patient families who share information, resources, and personal experiences relevant to the pediatric brain tumor journey. They also offer opportunities for parents, caregivers, survivors, and family members to ask questions. Learn about upcoming webinars and view recordings of past webinars at curethekids.org/webinars.

Pediatric Brain Tumor Foundation’s Vs. Cancer National Event Returns April 21-30 to Raise Money for Children with Brain Cancer and Their Families

Coaches and student athletes from high schools and colleges across the country will team up this April against the deadliest childhood disease: pediatric brain cancer. The Pediatric Brain Tumor Foundation’s Vs. Cancer National Event returns for its third year, April 21-30.

A signature fundraising program of the Pediatric Brain Tumor Foundation, Vs. Cancer empowers teams year-round to help kids with cancer in their communities. Teams pick one game each season where they play versus childhood cancer. Then they raise money to help the Pediatric Brain Tumor Foundation fund hospital and support programs for families navigating the profound emotional and financial impact of their child’s cancer diagnosis, as well as pediatric brain cancer research that’s unlocking new treatments and life-changing breakthroughs. Every dollar the Pediatric Brain Tumor Foundation invests in research attracts an additional 12 dollars in follow-on funding.

“Vs. Cancer makes it easy for you, your staff, and players to get involved and make a meaningful difference,” says University of South Florida Baseball Head Coach and Vs. Cancer Ambassador Billy Mohl. “We have made huge strides, but we still have a lot of work to do, and we need your help.”

The demand for pediatric brain cancer research and family support is at an all-time high, and this year’s 10-day Vs. Cancer National Event offers teams the opportunity to unite their voices and increase their impact against the childhood cancer community’s biggest crisis. A recent report revealed that more children are diagnosed with brain tumors than any other cancer. It also found that pediatric brain cancer is now the deadliest childhood disease, with incidence and mortality rates higher than ever.

Pediatric brain cancer trends are moving in the opposite direction of those for adults because childhood cancer does not receive the same level of attention or financial commitment as adult cancers. Through research funding, family support, and advocacy, the Pediatric Brain Tumor Foundation is committed to leading the way toward a future without childhood brain cancer. The support of Vs. Cancer fundraisers can make this better future possible.

In addition to making a difference in families’ lives, coaches participate in Vs. Cancer because it gives their student athletes a cause to rally around, improving players’ teamwork and leadership skills on and off the field.

“We started working with Vs. Cancer seven years ago when we had a young man battling cancer and it hit home. Our guys just take it to heart. They really care about the mission and this partnership means a lot to them,” says Bradley University Baseball Head Coach and Vs. Cancer Ambassador Elvis Dominguez.

Coaches, players and teams interested in participating in this year’s Vs. Cancer National Event should email Dave Mays, the Pediatric Brain Tumor Foundation’s Director of Vs. Cancer, at [email protected]. Teams who do not have a home game April 21-30 can work with the Pediatric Brain Tumor Foundation to designate any other date on their schedule as a Vs. Cancer game.

About the Pediatric Brain Tumor Foundation
Since 1991, the Pediatric Brain Tumor Foundation’s research funding, advocacy, and family support have led the way in ending the childhood cancer community’s biggest crisis. Dedicated wholly to addressing this rare, but devastating disease and guided by the experiences of patients, survivors, their parents, and siblings, the Pediatric Brain Tumor Foundation is the only organization to meet families’ needs along every step of their cancer journey.

The largest patient advocacy funder of pediatric brain tumor research, the foundation also funds and advocates for innovative projects that lead to vital discoveries, new clinical trials, and better treatments – all bringing us closer to a cure. We’re able to do that because of people and partners committed to supporting families and ending childhood brain cancer. Learn more at www.curethekids.org.

This April, join us on Capitol Hill and make your voice heard! 

Registration is now open for the Alliance for Childhood Cancer’s 2023 Action Days, held April 24th and 25th in Washington, D.C.  Action Days offer an incredible opportunity to join childhood cancer patients, survivors, caregivers, family members, and advocates from across the country, and speak with one voice to Congress about the most urgent issues facing our community.

Last year, we were able to bring together over 300 advocates from 39 states to participate in nearly 200 congressional meetings. We shared our stories, goals, and needs with the most influential legislative decisionmakers in our country, and let each other know that we’re not on this journey alone.

The Pediatric Brain Tumor Foundation is proud to participate in Action Days as a founding member of the Alliance for Childhood Cancer, composed of more than 20 of the country’s largest childhood cancer patient advocacy groups. Together, we work to increase awareness of childhood cancer and advance research and policies that will improve outcomes for patients. It’s our great joy to be able to work with so many key stakeholders in childhood cancer research and advocacy, and we hope that you will join us this Spring to share your stories with legislators!

Registration for Action Days is open now through March 31. Click here to learn more and register. If you have any questions, please email Mike Henry, the Pediatric Brain Tumor Foundation’s Director of Advocacy, at [email protected].

The Pediatric Brain Tumor Foundation is committed to making kids with brain tumors a national health priority. To join us in this mission, we urge you to sign up to receive future advocacy alerts at curethekids.org/advocate. Together, we can help educate policymakers and the public about the childhood cancer community’s biggest needs and concerns, and make our voices heard.

The American Motorcyclist Association (AMA) has named the Pediatric Brain Tumor Foundation the 2022 Recreational Road Riding Organizer of the Year. AMA’s annual Racing and Organizer Awards recognize standout individuals and organizations from AMA-sanctioned competition and recreational endeavors for their profound impact in the motorcycling community.

The longest-running national motorcycle charity program, the Pediatric Brain Tumor Foundation’s Ride for Kids provides road and offroad riders, racers, groups, and members of the moto industry the opportunity to help families facing the deadliest childhood disease: pediatric brain cancer.

“The Pediatric Brain Tumor Foundation is honored to receive this award, which would not be possible without the support of American Honda, the Comoto Family of Brands, our partners in the powersports community, and every Ride for Kids volunteer and fundraiser,” says Bob McNamara, the Pediatric Brain Tumor Foundation’s Director of Ride for Kids. “This recognition reflects the vibrant community our supporters have helped us build and the difference they make in families’ lives. We’re grateful for the passion, ingenuity, and determination they bring to Ride for Kids year after year.”

For over three decades, Ride for Kids has raised money to fund pediatric brain tumor research and provide financial, educational, and emotional support to patients and families throughout their cancer journey. In 2022, the Ride for Kids community raised over $1.4 million in support of the Pediatric Brain Tumor Foundation’s mission.  

This fundraising remains critical to ending the childhood cancer community’s biggest crisis. A report released in September revealed that more children are diagnosed and dying from brain tumors than any other cancer. In response, the Pediatric Brain Tumor Foundation is redoubling its commitment to fund promising early-stage research, advocating at the state and federal levels for childhood cancer policies, and directing family support resources where each dollar makes the most difference.

Ride for Kids fundraisers are the fuel for this work, and in 2023 there will be more ways than ever to make a difference. The Pediatric Brain Tumor Foundation is partnering with powersports industry brands, community events and riders to create new opportunities throughout the year to help families.

Attendees of next week’s AIMExpo Powersports Tradeshow in Las Vegas can visit booth #1016 or stop by the Dealernews Top 100 Celebration and AIMExpo Media Luncheon for a first look at the Pediatric Brain Tumor Foundation’s plans for this year’s Ride for Kids. You can also learn more by filling out the Ride for Kids interest form at www.curethekids.org/rideforkids.  AMA’s complete list of racing and organizer awardees can be found in their press release here.

About the Pediatric Brain Tumor Foundation
Since 1991, the Pediatric Brain Tumor Foundation’s research funding, advocacy, and family support have led the way in ending the childhood cancer community’s biggest crisis. Dedicated wholly to addressing this rare, but devastating disease and guided by the experiences of patients, survivors, their parents, and siblings, the Pediatric Brain Tumor Foundation is the only organization to meet families’ needs along every step of their cancer journey.

The largest patient advocacy funder of pediatric brain tumor research, the foundation also funds and advocates for innovative projects that lead to vital discoveries, new clinical trials, and better treatments – all bringing us closer to a cure. We’re able to do that because of people and partners committed to supporting families and ending childhood brain cancer. Learn more at www.curethekids.org.

The National Cancer Institute (NCI) is launching a first-of-its-kind, public-private partnership to bring clinical and patient navigation support to families facing childhood cancer. The White House announced the Childhood Cancer – Data Integration for Research, Education, Care, and Clinical Trials (CC-DIRECT) initiative on the one-year anniversary of the reignited Cancer Moonshot. 

CC-DIRECT is designed to improve access to care, participation in research and clinical trials, and data sharing for children, adolescents, and young adults throughout their cancer journey. CC-DIRECT also aims to establish a portable, shareable, standardized cancer health record for pediatric patients. 

“CC-DIRECT is a step in the right direction by the reignited Cancer Moonshot toward addressing the unique needs of children with cancer. Our hope is that this initiative makes it easier for families to access clinical trials for their child, accelerates researchers’ development of better treatments, and signifies a sustained and greater focus by policymakers on pediatric cancer patients,” says Courtney Davies, President and CEO of the Pediatric Brain Tumor Foundation. 

To truly end cancer as we know it, policymakers need to understand the challenges facing the childhood cancer community and commit to addressing them. A report published by the Central Brain Tumor Registry of the United States during Childhood Cancer Awareness Month revealed that more children under the age of 19 are diagnosed and dying from brain cancer than ever before, while adult brain cancer patients are experiencing a decline in the incidence of diagnosis and mortality rates.  

The Pediatric Brain Tumor Foundation is committed to making kids with brain cancer a national health priority, working with patients, survivors, parents, and other patient advocates to educate legislators and government agencies about the urgent need for increased resources. Sign up to be an advocate with the Pediatric Brain Tumor Foundation and make your voice heard. When you join our advocacy community, you’ll receive the latest news on legislation affecting the pediatric brain tumor community and opportunities to meet with policymakers and legislators. 

To learn more about CC-DIRECT and the other Cancer Moonshot initiatives announced last week, read the White House’s Fact Sheet here.   

Motorcycle dealers, manufacturers, and riders will get a first look at the Pediatric Brain Tumor Foundation’s plans for this year’s Ride for Kids at the 2023 AIMExpo Powersports Tradeshow taking place Feb. 15-17 in Las Vegas.  

The Pediatric Brain Tumor Foundation’s Ride for Kids raises money to fund critical research and provide financial, educational and emotional support to families affected by pediatric brain cancer, the deadliest childhood disease. For over three decades, riders and industry partners have rallied around kids and their families. In 2022, the Ride for Kids community raised over $1.4 million in support of the Pediatric Brain Tumor Foundation’s mission.  

The motorcycling community’s support is needed now more than ever. The number of kids diagnosed with brain tumors continues to grow, and the Pediatric Brain Tumor Foundation is responding by accelerating its efforts. Whether you’re a dealer, manufacturer or rider, there are more ways than ever to Ride for Kids and make a difference. 

The Pediatric Brain Tumor Foundation is partnering with powersports industry brands and community events to create new opportunities throughout the year for the motorcycling community to help families. Riders can also choose to participate in one of the Pediatric Brain Tumor Foundation’s organized rides, ride and fundraise as a group, or hit the road, track or trail as an individual. On September 17, 2023, supporters will come together to celebrate this year’s impact at National Ride for Kids Day celebrations across the country.  

Attendees of this year’s AIMExpo are encouraged to visit booth #1016 to learn how individuals and brands can get involved. You can also get involved by emailing [email protected] or filling out the Ride for Kids interest form at www.curethekids.org/rideforkids.  

About the Pediatric Brain Tumor Foundation
Since 1991, the Pediatric Brain Tumor Foundation’s research funding, advocacy, and family support have led the way in ending the childhood cancer community’s biggest crisis. Dedicated wholly to addressing this rare, but devastating disease and guided by the experiences of patients, survivors, their parents, and siblings, the Pediatric Brain Tumor Foundation is the only organization to meet families’ needs along every step of their cancer journey.

The largest patient advocacy funder of pediatric brain tumor research, the foundation also funds and advocates for innovative projects that lead to vital discoveries, new clinical trials, and better treatments – all bringing us closer to a cure. We’re able to do that because of people and partners committed to supporting families and ending childhood brain cancer. Learn more at www.curethekids.org.

The Pediatric Brain Tumor Foundation, the largest patient advocacy funder of pediatric brain tumor research and leading champion for families and survivors, announces the appointment of Peter Krause, Southeast region Chief Executive Officer and President, Marsh McLennan Agency (MMA), and Bryan Waddell, Brand Marketing Manager, Hot Pockets, Nestlé USA, to its Board of Directors.

“We are excited to welcome two new directors to the Pediatric Brain Tumor Foundation’s board. Peter and Bryan embrace our mission to end the deadliest childhood disease and are active and enthusiastic supporters. The energy and insights Peter and Bryan bring to their new roles will be essential to advancing our mission by closing the funding gap in pediatric brain cancer research, elevating the profile of this rare disease, and supporting families throughout their entire cancer journey,” says Courtney Davies, CEO and President of the Pediatric Brain Tumor Foundation.

Appointed Marsh McLennan Agency’s Southeast region CEO in 2020, Peter Krause oversees MMA’s offices in Georgia, Alabama, Tennessee, Kentucky, and Tallahassee, Fla. Based in Atlanta, he brings more than 30 years of insurance underwriting, marketing, and leadership experience to the role. He most recently served as president of MMA’s Southeast region. Clients, carriers, and colleagues benefit from Peter’s exceptional industry knowledge and leadership.

Peter is a longtime volunteer leader within the Pediatric Brain Tumor Foundation’s community, spearheading the MMA Southeast Charity Classic since 2018. Under his leadership, the Charity Classic has grown to become the largest single-event fundraiser for the Pediatric Brain Tumor Foundation. Since it began, the Charity Classic has raised more than $4 million in support of the Pediatric Brain Tumor Foundation’s mission.

Bryan Waddell currently serves as the Brand Marketing Manager for the Hot Pockets brand at Nestlé USA. Waddell has dedicated his career to driving brand relevance by challenging the status quo. For nearly two decades, he has focused on getting brands excited about bridging digital and physical worlds through uniquely integrated marketing programs.

Prior to his Hot Pockets role, Waddell served as the Head – Creators, Gaming and Esports within Nestlé’s Center for Marketing Excellence servicing the full brand portfolio at Nestlé USA. His work centered on growing brands through an engagement first approach that shattered performance benchmarks for CPG brands on TikTok and Twitch. Waddell also serves as a strategic advisor to PBTF GameON.

About the Pediatric Brain Tumor Foundation
Since 1991, the Pediatric Brain Tumor Foundation’s research funding, advocacy, and family support have led the way in ending the childhood cancer community’s biggest crisis. Dedicated wholly to addressing this rare, but devastating disease and guided by the experiences of patients, survivors, their parents, and siblings, the Pediatric Brain Tumor Foundation is the only organization to meet families’ needs along every step of their cancer journey.

The largest patient advocacy funder of pediatric brain tumor research, the foundation also funds and advocates for innovative projects that lead to vital discoveries, new clinical trials, and better treatments – all bringing us closer to a cure. We’re able to do that because of people and partners committed to supporting families and ending childhood brain cancer. Learn more at www.curethekids.org.

A multi-disciplinary forum of researchers, pharmaceutical industry representatives, patient advocacy organizations, and regulatory agency representatives from the United States and Europe recently published recommendations to address targeted drug development of mitogen-activated protein kinase (MAPK) pathway inhibitors. The result of an ACCELERATE forum held in collaboration with the FDA and EMA (European Medicines Agency), the paper also provides insights into how better clinical endpoints can be developed to actively reflect modern cancer treatment successes for children with MAPK pathway anomalies.    

The Pediatric Brain Tumor Foundation participated in this forum and the publication of the forum’s findings as a patient advocate, bringing the challenges of children with MAPK pathway brain tumors and their families into focus for the committee. 

A MAPK pathway is a chain of proteins in a cell that’s responsible for communication—transmitting a signal from a receptor on the cell’s surface to the DNA in the cell’s nucleus. A growing body of research has found that the MAPK pathway plays a key role in the development of many pediatric cancers, including the most common form of pediatric brain tumors, low-grade gliomas.  

ACCELERATE forums, held three times per year, are an opportunity for scientists, government regulatory agencies, patient advocates, and the pharmaceutical industry to determine which therapy, based on current evidence, is considered to have the highest potential to address pediatric cancer patients’ unmet needs. The goal is to help prioritize therapies to better meet the needs of patients and increase the feasibility of pediatric developments. 

One area the MAPK forum focused on was the use of combination therapy in clinical trials. In adult clinical trials, it’s standard to use multiple therapies at once. However, until recently, pediatric clinical trials have been limited to using one targeted therapy. The group agreed that MAPK pathway anomalies may require a combination of different targeted therapies to have the maximum impact for children.   

The committee also determined that new clinical/functional end-points should be agreed upon with regulatory agencies when a drug targeting the MAPK pathway is being reviewed for approval. Currently, the primary determinant for the success of a clinical trial is its survivorship rate. However, since the survival rates for pediatric low-grade glioma patients are relatively high, this endpoint does not adequately represent the positive impact that some targeted therapies are having on cancer patients’ and survivors’ quality of life.  

Because of this, certain drugs may be viewed as “unsuccessful,” even if they offer significant improvements over other treatments. This outdated view on a drug’s success can have a waterfall effect on its continued development: The FDA or EMA may reject it for ‘on-label use,’ which then impacts a pharmaceutical company’s inclination to develop the drug and insurers’ inclinations to cover it. This most often results in a loss of interest in further drug development for the specific indication, which can impact patients’ quality of life. 

Due to the success of targeted MAPK pathway inhibitors in clinical trials, the group also recommended that these drugs be included in front-line studies and that data generated be better aligned with regulatory requirements. Improved cooperation between regulatory agencies and clinical trialists will yield a more detailed understanding of this class of targeted drugs, so that children diagnosed with MAPK pathway diseases stand to receive the optimal benefit from treatments while minimizing their toxicity. 

Although the survival rate for pediatric low-grade glioma patients is high, the impact of current treatments leaves an indelible imprint on children, both in the short and long term. The Pediatric Brain Tumor Foundation’s hope, and the hope of all pediatric cancer advocates, is that more targeted drugs will be developed which reduce the complications and compromises patients currently experience.  

You can join us in our mission to end all childhood brain cancer. Sign up today at www.curethekids.org/stay-connected to stay up to date about opportunities to get involved through advocacy, fundraising, and donating. You can also read a more detailed review of the committee’s findings in the European Journal of Cancer, published here.

Pediatric brain cancer is the childhood cancer community’s biggest crisis.  

Brain tumors are the most commonly diagnosed and deadliest form of childhood cancer. Current treatments, which are often toxic for kids, are decades behind medical advances in other diseases. And on top of all that, patients routinely experience red tape and bureaucratic delays that can seriously impact health outcomes. 

Childhood cancer is rare, but its impact is immeasurable. Advocacy plays an important role in getting the public to understand the burdens facing our families. Our kids deserve to be seen and heard. Advocates ensure that happens. 

Though legislation is key to unlocking more funding and resources for children with cancer, advocacy is much more than a legislative process. Put simply, being an advocate means using your voice and sharing your unique story to enact change.  

If you’re curious about how you can help accelerate advancements in pediatric brain tumor research and improve families’ access to equitable care, here are six ways to make your voice heard. The best part? None of these options need to be tackled alone; the Pediatric Brain Tumor Foundation is here to work with you throughout the entire process. Email Director of Advocacy Mike Henry at [email protected] if you’re interested in getting started with any of these ideas. 

1. Meet with your federal legislators. Plan to join us at this year’s Alliance for Childhood Cancer Action Days, April 24-25, 2023 in Washington, D.C. This annual event enables patients, survivors, caregivers, siblings, and other loved ones of children with cancer to speak directly to Congress about the community’s most urgent issues. Registration opens soon. Sign up to receive an alert about Action Days and other opportunities to meet with your legislators throughout the year. 
2. Share your story with us through our website. Personal testimonials are one of the most powerful means of raising awareness about pediatric brain tumors. They put a name to the crisis and also help others as they face their own journeys. Fill out our Share Your Story form and we’ll work with you to tell your story.  
3. Join our state cancer plan initiative. Your state’s cancer plan acts as a blueprint for addressing the burden of cancer in your specific area. While all plans focus on adult cancers, few thoughtfully address the unique needs of children and their families. The Pediatric Brain Tumor Foundation is spearheading efforts in states across the country to include state cancer plan language specific to childhood cancer and state budget funding specific to pediatric brain tumors. If you’d like to learn about pediatric brain tumors’ impact in your state and how you can advocate for local families, email [email protected].  
4. Increase public awareness in your local community. There are many creative ways available for this form of advocacy. Your imagination is the limit! Raising public awareness can take the form of publishing an op-ed or sharing your story through local news and social media, organizing a public awareness event, or petitioning your city or state to recognize an official awareness day or month. Many cities also offer landmark lightings that recognize causes throughout the year. Reach out to your local landmarks and community leaders about lighting up “Gray in May” for Brain Tumor Awareness Month or gold in September for Childhood Cancer Awareness Month. Contacting local news media to cover any of these activities will further raise awareness.  
5. Testify before the government. You can request to testify in front of your state’s legislature. Do an internet search using terms such as “testify at [name of state] state legislative hearing” for guidance on how to register for a speaking spot. You can also volunteer to speak at a federal congressional hearing. This type of testimony demonstrates strong representation from the pediatric brain tumor community and provides valuable “consumer” input into the legislative process. 
6. Help us reach others interested in advocacy work. When it comes to advocacy, there’s power in numbers. Share this article or our advocacy interest form (www.curethekids.org/advocate) with your family members, friends, coworkers and social media networks. Let them know why childhood cancer advocacy is urgently needed and how their support can help.  

The Pediatric Brain Tumor Foundation is committed to making kids with brain tumors a national health priority. You can make your voice heard and help us educate policymakers and the public about the childhood cancer community’s biggest crisis by signing up to be an advocate with us! If you’d like to learn more about any of the above ways to be an advocate or want to share your own ideas, email the Pediatric Brain Tumor Foundation’s Director of Advocacy Mike Henry, at [email protected].  

Duke University’s Reitman Lab recently celebrated the publication of their first study based on original research started and finished in the lab. The lab is led by Dr. Zachary James Reitman, an Assistant Professor of Radiation Oncology, Pathology and Neurosurgery, a Duke Cancer Institute member, and the recipient of an Early Career Development grant from the Pediatric Brain Tumor Foundation.

The Pediatric Brain Tumor Foundation’s Early Career Development program supports rising stars in research, like Dr. Reitman, who are working on the next breakthrough in pediatric brain cancer treatment. Given the significant and ever-increasing challenges faced by junior investigators in establishing successful research programs, these multi-year research grants provide recipients the funding needed to become fully independent investigators. Equally importantly, our scientific advisors provide invaluable mentorship as grantees pursue advancements and novel therapies for children with brain tumors.

Dr. Reitman received a three-year, $300,000 Early Career Development grant, and the paper resulting from this funding is a significant milestone in his career: his first publication of new, original data and the first to list him as the corresponding author.

Published in Cancers, the study explores how radiation therapy in a PTEN-mutated brainstem glioma is affected by inhibiting the function of ataxia–telangiectasia mutated kinase (ATM), a master regulator of the cellular response to radiation therapy. The current standard of care for brainstem gliomas is radiation therapy, but these deadly tumors inevitably progress at some point after treatment. One treatment strategy for brainstem gliomas under preclinical investigation involves inactivating ATM. While ATM inactivation makes some tumors more sensitive to radiation therapy, this sensitivity may depend on the genetic makeup of the tumor.

The research team developed a genetically engineered mouse model of a PTEN-mutated brainstem glioma and used genetic tools to test whether ATM inactivation affected this important tumor subtype’s radiosensitivity. The team found that inactivation did not enhance the efficacy of radiation therapy in the mouse models, which indicates that PTEN mutational status should be considered in the design of inclusion criteria and correlative studies for future clinical trials studying ATM inhibitors in brainstem glioma patients.

“The Pediatric Brain Tumor Foundation’s support helped us carry out this study, which is the first major publication from our new lab at Duke,” says Dr. Reitman. “The results will guide clinical trial design for children with brain tumors, and this article shows that our group can carry out the genetically engineered mouse work and complex radiation therapy work needed for future studies of pediatric brain tumors.”

Earlier this year, the Pediatric Brain Tumor Foundation awarded Dr. Reitman a new grant for his project, Data Project Investigating High-Grade Giloma Immune Microenvironment During Tumorigenesis and Treatment in Primary Mouse Models. This additional funding will generate ideal preliminary data to show that the project team at Duke has single-nucleus and spatial RNA-sequencing data on their mouse models, providing “anchor data” that can be used to compare these models with human tumors and identify gene signatures to test when the mice are exposed to different therapies.

The milestone publication of Dr. Reitman’s paper and his new project’s demonstration of the mouse models’ feasibility and characterization will greatly enhance future grant submissions to the National Cancer Institute, the largest funder of cancer research in the world. Because the NCI’s multi-million-dollar grants are highly competitive, scientists studying childhood brain cancer are profoundly dependent on the Pediatric Brain Tumor Foundation’s seed funding to prove their research’s efficacy and secure the large-scale government funding that can further their scientific breakthroughs. Every dollar the Pediatric Brain Tumor Foundation invests in research attracts an additional 12 dollars in follow-on funding for new scientific exploration.

To help us continue providing this important research funding, you can participate in our year-end holiday giving campaign, which aims to raise $365,000 by January 1st. Your donation is tax-deductible and supports our efforts to fund and advocate for scientific discoveries and provide pediatric brain cancer patients, survivors, and their families with the resources they need. To learn more or make a donation, visit curethekids.org/holiday2022. The results of Dr. Reitman’s research can be found here.

UPDATE (Dec. 22, 2022): Following this week’s Senate vote, the House of Representatives unanimously passed the Childhood Cancer STAR Reauthorization Act. The bill now heads to President Biden’s desk for his final signature. Thank you to everyone who advocated for this reauthorization in 2022 — your efforts have ensured that crucial research will continue for years to come!

Last night, the Senate unanimously passed the Childhood Cancer STAR Reauthorization Act. First passed in 2018, the STAR Act is the most comprehensive legislation addressing pediatric cancer in U.S. history. Its reauthorization provides four additional years of funding for the programs established in the original STAR Act. Thank you to everyone who advocated this year on behalf of patient families and children with brain cancer. Your voice matters and helped make the Senate’s vote possible!

The bill now moves to the House of Representatives for a vote before the end of the year. If you haven’t done so, please reach out to your local legislator and urge them to support the STAR Reauthorization Act when it is brought to the floor for a vote.

HOW TO CALL YOUR REPRESENTATIVE:

• Call the U.S. Capitol switchboard at 202-224-3121 and say: “Hi, can you please connect me with my U.S. Representative? My zip code is [zip], thank you.”
• Once you are connected with their office or voicemail, say the following about the Childhood Cancer STAR Reauthorization Act: “Hi, I’m [your name], one of your constituents from [your town or city]. I want to urge you to protect the health of childhood cancer patients and survivors in any end-of-year package by supporting the Childhood Cancer STAR Reauthorization Act. This bill ensures that pediatric cancer research continues to be funded. Children with cancer are desperate for research into safer treatment options. They are often an afterthought in the broader cancer community, and many of our dedicated researchers rely on the federal government to support their efforts. [Please feel free to share why these issues matter to you and your loved ones.]”
• If your Representative has co-sponsored STAR Reauthorization, you can also call them to thank them for their support.

More information about the STAR Reauthorization Act can be found in our September Legislative Update. If you have any questions about a specific bill or reaching out to your legislators, please get in touch with Mike Henry, the Pediatric Brain Tumor Foundation’s Director of Advocacy, at [email protected].

Families affected by pediatric brain tumors face unique and profound challenges. Existing treatments are decades old and often do more harm than good to children’s developing brains, while administrative red tape causes unnecessary delays in families’ ability to access lifesaving care.

To truly end childhood brain cancer as we know it, policymakers need to understand these challenges and commit to addressing them. Here are two opportunities to join your voice with other advocates and remind legislators that children with brain tumors deserve better:

Time’s Running Out on the STAR Reauthorization Act and Gabriella Miller Kids First Research Act 2.0

The Gabriella Miller Kids First Research Act 2.0 and Childhood Cancer STAR Reauthorization Act are at significant risk of not being renewed by the end of this year’s Congressional session. Both bills are critical to making sure pediatric cancer research continues to be funded in the coming years.

Recently, the Pediatric Brain Tumor Foundation’s leadership sent a letter to Senator Richard Burr of the Health, Education, Labor and Pensions Committee urging him to include these bills in Congress’ year-end spending package. Check out November’s advocacy alert for a copy of the letter, social media templates and a phone script you can use to ask your Senators to co-sponsor both bills immediately.

Save the Dates for the Alliance for Childhood Cancer’s 2023 Action Days

Action Days 2023, led by the Alliance for Childhood Cancer, will return to Washington, D.C. April 24-25, 2023.

The Pediatric Brain Tumor Foundation is proud to be a founding member of the Alliance, composed of the country’s largest patient advocacy organizations working to advance childhood cancer policies. Action Days 2023 will provide patients, survivors, caregivers, siblings, and other loved ones of children with cancer an opportunity to speak with one voice to Congress about the most important and urgent issues our community faces.

Sharing your story with your legislators this Spring will ensure that pediatric brain tumor families are heard loud and clear on Capitol Hill. Last year’s Alliance Action Days included nearly 300 advocates from 39 states participating in nearly 200 Congressional meetings.

Sign up today to receive an update from the Pediatric Brain Tumor Foundation when registration opens in early 2023. If you have any questions about specific bills or reaching out to your legislators, email Mike Henry, our Director of Advocacy, at [email protected].

The Pediatric Brain Tumor Foundation is committed to making kids with brain tumors a national health priority. You can make your voice heard and help us educate policymakers and the public about the childhood cancer community’s biggest crisis by signing up to be an advocate with us. Sign up to receive future advocacy alerts and join our efforts at www.curethekids.org/advocate.