November Advocacy Alert: Senator Burr Urged to Include STAR Reauthorization Act and Gabriella Miller Kids First Research Act 2.0 in Year-End Legislation

Today, members of the Pediatric Brain Tumor Foundation’s leadership from North Carolina sent the following letter to Senator Richard Burr (NC) in support of the Childhood Cancer STAR Reauthorization Act and Gabriella Miller Kids First Research Act 2.0. As a ranking member of the Senate’s Health, Education, Labor and Pensions (HELP) Committee, Senator Burr can help influence what bills will be included in Congress’ year-end spending package. Both bills are crucial to the future of childhood cancer research.

Read the letter below to learn more about the importance of this legislation and join us in reaching out to your Senators. Templates for tweeting and calling your Senators can be found below our letter. 

Dear Senator Burr,

We are proud residents of North Carolina. We are also advocates for children dealing with brain tumors and rare forms of pediatric cancer. Our organization, the Pediatric Brain Tumor Foundation, has worked with countless families and allies throughout the state, and across the U.S., to help address their needs.

Our organization funded a study, published September 2022, that shows pediatric brain cancer is now the most commonly diagnosed and deadliest form of childhood cancer. Our patient families are desperate for research into safer treatment options. Children are often an afterthought in the broader cancer community, and many of our dedicated researchers rely on the federal government to support their efforts. As we approach the end of this year, you and your colleagues have the opportunity to stand up for children with cancer by including two bills in your year-end legislative package.

First, the Gabriella Miller Kids First Research Act 2.0 (S. 1521) will continue the important progress made since the original bill was passed in 2014. If we allow funding for this program to expire, we will lose years of life-saving research. Its modest request for increased support will accelerate treatment developments that give kids a chance.

The second piece of legislation is the Childhood Cancer STAR Reauthorization Act (S. 4120). This bill will approve five years of funding for the most comprehensive and successful childhood cancer legislation in U.S. history. The research being funded by the original STAR Act has furthered our understanding of what it means to live with childhood cancer. It has also led to unprecedented cooperation amongst those in our research community. We are glad to see that your colleague, Senator Tillis, is one of the 35 cosponsors of this legislation.

As a ranking member of the Senate’s HELP committee, your voice is powerful. Kids in North Carolina deserve champions who will fight for their right to survive and thrive. We encourage you to join your colleagues in support of these crucial bills.

Sincerely,
Courtney Davies, President and CEO, Pediatric Brain Tumor Foundation
Geoff Still, Chief Financial and Operating Officer
Ian Joyce, Chief Marketing and Mission Experience Officer
Kristin Young, Board of Directors
Anne Sutton, Board of Directors
Chase Jones, Board of Directors
Larry Little, Board of Directors

There are two ways you can join us in asking your Senators to co-sponsor the Gabriella Miller Kids First Research Act 2.0 and Childhood Cancer STAR Reauthorization Act or thank them if they already are a co-sponsor. Find lists of both bills’ Senate co-sponsors here and here.

1. Tweet your Senators:

If your Senators haven’t co-sponsored the Gabriella Miller Kids First Research Act 2.0 or Childhood Cancer STAR Reauthorization Act, tag them in a tweet asking them to co-sponsor. Here’s a preview of what your tweets could say:

  • @[Senator’s username] Please co-sponsor the STAR Reauthorization Act. This bill continues the funding of groundbreaking research into better treatments for pediatric cancer. #KidsDeserveCures #ChildhoodCancerAwareness
  • @[Senator’s username] Please co-sponsor the Gabriella Miller Kids First Research Act 2.0. Childhood cancer patients and their families rely on the federal government’s support of lifesaving research. #KidsDeserveCures #ChildhoodCancerAwareness 

If your Senators have co-sponsored these bills, tweet them to thank them for their support.

2. Call your Senators’ offices:

Direct contact information for members of the Senate can be found here. The U.S. Capitol switchboard can also easily connect you with your Senators:

  • Call the U.S. Capitol switchboard at 202-224-3121 and say: “Hi, can you please connect me with the senior Senator from my state? My zip code is [zip], thank you.” After you speak with your senior Senator or leave a voicemail, you will need to call back and ask to be connected with the junior Senator from your state.
  • Once you are connected with their office or voicemail, say the following if they haven’t co-sponsored the Gabriella Miller Kids First Research Act 2.0 or 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 co-sponsoring two bills: the Gabriella Miller Kids First Research Act 2.0 and Childhood Cancer STAR Reauthorization Act.Both of these acts are important to making sure 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.As we approach the end of this year, you and your colleagues have the opportunity to stand up for children with cancer by ensuring both acts are included in the year-end legislative package. Please co-sponsor both the Gabriella Miller Kids First Research Act 2.0 and Childhood Cancer STAR Reauthorization Act today.[Please feel free to share why these issues matter to you and your loved ones.]”
  • If your Senators have co-sponsored these bills, you can also call them to thank them for their support.

More information about both bills can be found in our September Legislative Update. If you have any questions about a specific bill or reaching out to your Senators, please reach out to 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, and these pieces of legislation hold the potential to drive new scientific discoveries. You can make your voice heard and help us educate Congress about the need to pass this legislation 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.

Pediatric Brain Tumor Foundation’s Ride for Kids Raises $1.4 Million in 2022; 2023 National Ride for Kids Day to Take Place September 17, 2023

Motorcyclists, community partners, and powersports industry leaders American Honda, the Comoto Family of Brands, and GEICO Motorcycle went the extra mile in 2022 for families facing the deadliest and most diagnosed childhood cancer. The Pediatric Brain Tumor Foundation’s Ride for Kids raised $1.4 million this year to fund research for a cure and help children, survivors, parents, and siblings get the care they need.

The support of the Ride for Kids community is needed now more than ever. A new report released in September showed more children under the age of 19 are diagnosed with brain tumors, and dying from them, than ever before. Meanwhile adult brain cancer patients are experiencing declines in incidence of diagnosis and mortality.

“Because of the incredible generosity and dedication of the motorcycling community, the Pediatric Brain Tumor Foundation’s Ride for Kids has grown into a nationwide movement – united to end the childhood cancer community’s biggest crisis,” says Michael Battaglia, Ride for Kids Fundraising and Community Engagement Manager. “Thank you to every fundraiser and partner who hit the road, track, and trail this year to support our mission. Because of you, no family has to face this disease alone.”

Highlights from the 2022 Ride for Kids season include:

  • Longtime national presenting partner American Honda increased their support of the Pediatric Brain Tumor Foundation’s mission through a significant donation towards the development of an online community platform for patient families and inspired riders’ fundraising through their support of four Honda motorcycle drawings.
  • The Comoto Family of Brands took the lead in hosting the Philadelphia Ride for Kids, as their Revzilla, Cycle Gear, and J&P Cycles brands celebrated National Ride for Kids Day with a company-wide Give Back Day on September 18. Comoto’s REVER platform also provided route maps, subscriptions, and mileage tracking for local ride events and hosted the 2nd annual Million Mile Challenge with a $25,000 donation for one million miles ridden.
  • GEICO Motorcycles joined the Ride for Kids community as the newest national industry partner, teaming up with REVER to offer a $25,000 matching contribution for the Million Mile Challenge.
  • Community partners, led by our platinum-level partners AudacyRideNowTucker PowersportsAngier Bike Fest, and Indian Brave Campground, contributed to local rides’ growth, while several riders – including the Why We Ride to the Quail community and YouTuber Bhroman Braapsody — showed there’s no limit to how you Ride for Kids.

The Pediatric Brain Tumor Foundation’s plans for the 2023 Ride for Kids season are underway, with National Ride for Kids Day scheduled for Sunday, September 17, 2023, during the heart of Childhood Cancer Awareness Month. Whether you choose to participate in one of our organized rides, ride and fundraise as a group, or hit the road as an individual, anyone anywhere can take part in Ride for Kids.

Registration opens soon. If you’re interested in volunteering for a ride or hosting your own, email Michael Battaglia at [email protected].

About the Pediatric Brain Tumor Foundation
No parent believes their child will be diagnosed with brain cancer. When it happens, no patient, parent, sibling, or survivor should have to stand alone. The Pediatric Brain Tumor Foundation is there for families facing the deadliest and most commonly diagnosed childhood cancer, responding with resources and community support that address every family member’s needs. 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.

Pediatric Brain Tumor Foundation Awards Research Grant to Identify Why Some Low-Grade Glioma Brain Tumors Spread

The Pediatric Brain Tumor Foundation (PBTF) has awarded a $200,000 grant to Dr. Michael Dewan, assistant professor of Neurological Surgery and Surgical Director of the Pediatric Neuro-Oncology Program at Monroe Carell Jr. Children’s Hospital at Vanderbilt, to study why low-grade gliomas behave and spread like cancerous tumors. 

Low-grade gliomas are the most common form of pediatric brain tumor. Non-cancerous, they are slow-growing and typically more treatable than other types of brain tumors. Over time, though, some low-grade gliomas spread to different parts of the brain and spine. When they do, they become more aggressive and mortality rates rise.  

“We know there are molecular alterations that occur in lung cancer, for example, that predispose them to metastasize to other parts of the body,” says Dr. Dewan. “We wonder whether similar mutations or a genetic change at the cell level happens in low-grade gliomas, prompting the tumor, instead of being localized in one part of the brain, to begin to spread.” 

Pinpointing the molecular alterations could eventually lead to treatment.  

“If we can find those molecular alterations…then in the future when we have a patient with a low-grade glioma, we can interrogate that tumor for the same molecular alterations,” Dr. Dewan says. “When we find one, we say, ‘time out.’ This has been identified as low grade, but we aren’t going to treat it as such. We are going to be more aggressive with it. We may image it more often or perhaps resect it more extensively to get ahead of it before it becomes a bad actor.” 

PBTF’s grant funding will enable Dr. Dewan and collaborators at Vanderbilt University Medical Center and Toronto’s Hospital for Sick Children to collect low-grade glioma tissue samples and molecular information from all over the world, which Dr. Dewan explains is crucial to the project’s success 

“We can’t just study 20 patients. In order to get enough data to make definitive conclusions we need more patients, and to get more patients we need more centers,” he says. “Partnering with PBTF in this effort has changed what is possible. Not only can we recruit more centers, but we can take a much deeper dive into the molecular nuances of these tumors.  This international collaboration demonstrates a rare, diverse symphony of investigators, neurosurgeons, oncologists, and pathologists. The work we do together will have a direct impact on children here and around the world.” 

Amy Weinstein, PBTF’s National Director of Research Investments, echoes Dr. Dewan’s enthusiasm at the project’s potential. “Low-grade gliomas are often overlooked in research. Because they’re considered ‘low-grade,’ there’s a misconception that they aren’t harmful. On behalf of the thousands of children facing this disease, PBTF is grateful to Dr. Dewan and his colleagues for prioritizing low-grade gliomas as an area of discovery. More effective treatments have the potential to change the trajectory of children’s lives.” 

PBTF is committed to leading the way to a future without childhood cancer by identifying and addressing gaps in how children are diagnosed, treated, and cared for throughout their lives. The largest patient advocacy funder of pediatric brain tumor research, every dollar PBTF invests attracts another 12 dollars in follow-on funding. You can help us make more breakthroughs and better treatments possible. Sign up today to receive the latest pediatric brain tumor news and learn how you can make a difference.

Pediatric Brain Tumor Foundation Returns as No-Shave November Nonprofit Partner to Increase Support for Families Facing Most Commonly Diagnosed Childhood Cancer

Childhood brain cancer is a growing threat to families across the country. The most commonly diagnosed childhood cancer, pediatric brain tumors are also the leading cause of death by disease for children under 19. Ending pediatric brain cancer and addressing the profound developmental, emotional and financial impact it has on families requires a united effort. The Pediatric Brain Tumor Foundation is excited to team up with No-Shave November for the second year in a row to shine a light on the childhood cancer community’s biggest crisis.

Since its establishment in 2009, No-Shave November has been been a rallying cry for like-minded nonprofits from across the cancer community, partnering to raise awareness about cancer’s impact, educating a greater number of individuals about cancer prevention and research, and providing support to patients, survivors, and families. Last November, the PBTF community topped the No-Shave November nonprofit leaderboard — raising over $79,000 in one month for children with brain cancer and their families.

Geoff Still, a 2021 No-Shave November participant and PBTF’s Chief Financial Officer & Operating Officer, understands first-hand the impact No-Shave November supporters have on children, survivors and families:

“My life forever changed on May 5, 2016, when my son Eze had emergency surgery to remove a mass from his brain. I joined a club no one ever wants to join when days later we learned the mass was cancerous,” he shares. “My family was lucky with my son’s recovery, but so many families don’t experience the same fate. More children under the age of 19 are diagnosed and dying from brain cancer than ever before, yet funding for childhood cancers is greatly outpaced by funding for adults. The impact made through the No-Shave November efforts will give more hope to families and bring us one step closer to finding a cure.”

“We’re hoping our name helps bring more awareness to these incredible organizations,” says Monica Hill, Matthew Hill Foundation, Inc. President. “No-Shave November has become synonymous with fundraising for cancer and we are extremely proud of that. If we can get our donors to see these nonprofits doing groundbreaking work from prevention to survivor support to researching for a cure…we think that will make a lasting impact.”

Join the Pediatric Brain Tumor Foundation this November by gathering your co-workers, friends, and families, ditching your razors, and canceling your waxing appointments. Register or donate today at www.no-shave.org and choose ‘Pediatric Brain Tumor Foundation’ from the ‘Select Partnership’ dropdown to direct your support to the PBTF community (non-designated gifts will be shared with PBTF and all participating nonprofits).

About the Pediatric Brain Tumor Foundation
No parent believes their child will be diagnosed with brain cancer. When it happens, no patient, parent, sibling, or survivor should have to stand alone. The Pediatric Brain Tumor Foundation is there for families facing the deadliest and most common childhood cancer, responding with resources and community support that address every family member’s needs. The largest patient advocacy funder of pediatric brain tumor research, PBTF 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.

About No-Shave November
No-Shave November is a fundraising campaign operated by the Matthew Hill Foundation, Inc., a registered 501(c)3 nonprofit organization. No-Shave November was reinvented by the Chicago-based Hill Family: grow with a purpose and raise money for charity. This initiative was inspired by the Hills’ late father, Matthew, who passed away from colon cancer in November 2007. From a few Facebook followers willing to donate their hard-earned money to thousands of donors championing against cancer, No-Shave November has become a global celebration. No-Shave November is now operated by the Matthew Hill Foundation, Inc. (est. 2015), but holds the same goals. No-Shave November promises to keep raising money for cancer prevention, education, and research and to let that hair grow in the process. No-Shave November believes that together, anything is possible, and we’ll get closer to eradicating cancer one whisker at a time!

October Advocacy Alert: Make Your Voice Heard October 19 on the Pediatric Day of Action

When children with cancer need treatment, time is of the essence. But often they face burdensome, unnecessary delays or are being treated with therapies that are ineffective and toxic. There are two pieces of critical legislation aiming to change that. However, they first need to be passed by Congress before year-end:

  • Accelerating Kids’ Access to Care Act will address delays in care by creating an alternative opt-in for provider screening and enrollment where providers in good standing could enroll in multiple state Medicaid programs, allowing them to provide essential, time-sensitive care to children who need it. (House Co-sponsorsSenate Co-sponsors)
  • STAR Reauthorization Act will provide five more years of funding for the Childhood Cancer Survivorship, Treatment, Access and Research Act, the most comprehensive legislation addressing pediatric cancer in U.S. history. (House Co-sponsorsSenate Co-sponsors)

On Wednesday, October 19, the Pediatric Brain Tumor Foundation and other pediatric cancer advocates will come together to remind legislators that children and families deserve better treatments and access to care. There are two ways you can join us on the Pediatric Day of Action and ask your representative to co-sponsor the bills or thank them if they already are a co-sponsor:

1. Tweet your legislator:

If your representative hasn’t co-sponsored the STAR Reauthorization Act and Accelerating Kids’ Access to Care Act, tag them in a tweet asking them to co-sponsor. Here’s a preview of what your tweets could say:

  • @[Legislator’s username] Please co-sponsor the STAR Reauthorization Act. This bill continues the funding of groundbreaking research into better treatments for pediatric cancer. #KidsDeserveCures #ChildhoodCancerAwareness
  • @[Legislator’s username] Please co-sponsor the Accelerating Kids’ Access to Care Act. No childhood cancer patient should be left waiting for lifesaving treatment. #KidsDeserveCures #ChildhoodCancerAwareness 

If your legislator has co-sponsored these bills, tweet them on the Pediatric Day of Action to thank them for their support.

2. Call your legislator’s office:

The U.S. Capitol switchboard can easily connect you with your Representatives and Senators.

  • Call the U.S. Capitol switchboard at 202-224-3121 and say: “Hi, can you please connect me with my Member of Congress? My zip code is [zip], thank you.”  Direct contact information for members of the Senate and House of Representatives can be found here and here.
  • Once you are connected with your representative’s office or their voicemail, say the following if they haven’t co-sponsored the STAR Reauthorization Act and Accelerating Kids’ Access to Care 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 co-sponsoring two bills:   

First, we need to make sure that pediatric cancer research is funded for another five years, which is why I want you to support the Childhood Cancer STAR Reauthorization Act.   

Second, kids often travel out-of-state for care, to see a specialist, or participate in a clinical trial. For kids on Medicaid, this process can lead to unnecessary delays in care due to administrative red tape, which can cause a child’s condition to worsen. Please co-sponsor the Accelerating Kids’ Access to Care Act to allow kids time-sensitive access to the doctors they need to become survivors. 

[Please feel free to share why these issues matter to you and your loved ones.]”    

  • If you’d also like to call your Senators: Repeat Step 1 and ask to be connected with the senior Senator from your state.  Then repeat Step 1 again and ask to be connected with the junior Senator from your state.
  • If your legislator has co-sponsored these bills, you can also call them on the Pediatric Day of Action to thank them for their support.

More information about both bills can be found in our September Legislative Update, including their co-sponsors.  If you have any questions about a specific bill or this month’s Pediatric Day of Action, please reach out to Mike Henry, our Director of Advocacy, at [email protected].

PBTF is committed to making kids with brain tumors a national health priority, and these pieces of legislation hold the potential to provide families with much-needed relief and drive new scientific discoveries. You can make your voice heard and help us educate Congress about the need to pass this legislation by signing up to be an advocate with PBTF. Sign up to receive future advocacy alerts and join our efforts at www.curethekids.org/advocate.

The Last Birthday: A Father and Advocate Shares the Personal Impact of Pediatric Brain Cancer

Mike Henry, the Pediatric Brain Tumor Foundation’s Director of Advocacy, understands first-hand the devastating impact of pediatric brain cancer and why urgent and substantial action is needed to address this growing public health crisis. In 2019, his daughter Blair “BB” Henry celebrated her final birthday before passing away from brain cancer. She was three years old. He shares “BB” and his family’s story in this essay. 

I stood by the bouncy castle in the backyard with an unfocused stare, trying to muster the energy to start my errands. We had been discharged for just a few days. Our attention had been trained on my daughter’s blood results. Would her immunity levels be high enough for us to celebrate? Her last birthday was here.  

The previous month was hellish. Her biopsy left half of her body mostly limp. The harsh chemotherapy drugs decimated her tiny body. All her hair fell out over what seemed like a few hours. We had sleepless nights watching her chest for active breathing because her throat had almost swollen shut from the mucositis. Hospital equipment beeps became the soundtrack of every waking second. The traumatic moments compounded until it all felt normal.  

That all feels so unnecessary now. The tumor that was wrapped around her brain stem put that treatment plan in motion before we realized the reality of her future. Our care team knew before we did. Her 40-year veteran neuro-oncologist burst into tears while talking about her deteriorating health. They gently helped guide our decision to transition to palliative care. They gifted us good months of memory-making.  

On the precipice of three years old and gearing up for her final birthday. This was supposed to be the first birthday party she remembered. A memory you look back on with fondness. Our definition of memorable had changed. Sadness threatened to derail event planning at any second, but we pushed ahead.  

The day saw friends, family and supporters trickle through. There were games, an ice cream truck, and an outdoor movie screening. For the first time in weeks, she wasn’t a cancer patient. She was a kid who couldn’t wait to eat cake with her friends and family. There were flickering moments of what our life was like pre-diagnosis. For weeks we had small moments just like this. These were the snapshots most people saw. Laughter and fun. Trips to fun places, surrounded by our inner circle.  

Most didn’t see her decline. They weren’t included in the daily conversations about the strength of her morphine doses. They didn’t see the steroids bloat her entire body to the point of near immobilization. They didn’t hear her voice start to give out. That was the first sign. We knew her tumor would grow until there wasn’t any room left. It was like waiting around to get hit by an oncoming truck. Eventually, she would lose consciousness, her body would shut down her ability to breathe, and we would have to watch her suffocate for several hours until she passed.  

Many people know parents like me who obsess over what ailed their child. It can feel a bit much to folks who haven’t experienced those awful moments. When we only allow the world to see the good moments, it can be hard to understand why we can’t stop talking about the bad. The horrors of childhood cancer create the urgency we feel. 

In September, a comprehensive report published by the Central Brain Tumor Registry of the United States and funded by the Pediatric Brain Tumor Foundation found that pediatric brain cancer is now the most commonly diagnosed childhood cancer in the United States. It is also the deadliest and only getting worse, while adult brain cancer patients are experiencing a decline in the incidence of diagnosis and mortality rates.  

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. The lack of focus and funding means slow progress for the more than 120 types of pediatric brain tumors in need of treatment advancements.   

Since my daughter’s passing, I have met some of the most remarkable people in the world. They are happy warriors who continue to carry their child’s memory or compassionate caregivers entrenched in the battle. They are inspiring survivors dealing with complex side effects or siblings advocating for their brothers and sisters. We are all working to change the outcome for families like ours. It’s time to make childhood brain cancer a priority. Every kid deserves their next birthday.  

The Pediatric Brain Tumor Foundation is committed to leading the way toward a better future for kids, and we need patient advocacy organizations, pharmaceutical companies, researchers, and caring individuals like you to walk alongside us as we address pediatric brain cancer’s impact. You can make your voice heard by advocating for families in your local community and across the country. Sign up now to be an advocate with PBTF: www.curethekids.org/advocate.

September Advocacy Alert: Current Legislation Impacting the Childhood Cancer Community

There are several pieces of legislation that the Pediatric Brain Tumor Foundation has recently endorsed and is actively monitoring that may help families facing a child’s brain tumor diagnosis. Learn more about this legislation in this advocacy update, including which Senators and Representatives currently sponsor each piece of legislation:

If one of your elected legislators is not a co-sponsor, you can contact their office and ask them to become a co-sponsor. Contact information for members of the Senate can be found here and House of Representatives here. If you have any questions about a specific bill or want to know how you can get more involved in PBTF’s advocacy efforts, please reach out to Mike Henry, our Director of Advocacy, at [email protected].

 Accelerating Kids’ Access to Care Act (H.R. 3089/S. 1544)

Many states lack healthcare facilities to treat some of the most complex and aggressive pediatric brain tumor diagnoses. As a result, many patient families travel long distances to seek treatment. The Accelerating Kids’ Access to Care Act, introduced in May 2022, is a critical piece of legislation that would provide children with brain tumors and other complex medical needs better and faster access to providers who can best meet their health challenges.

More than half of children in the United States rely on Medicaid and the Children’s Health Insurance Program (CHIP) as their primary sources of healthcare coverage, which limit patients to seeing providers in a child’s home state. If a child’s medical condition requires them to obtain care from an out-of-state provider, the provider must go through the screening and enrollment process in the child’s home state Medicaid program. Providers regularly spend an immense amount of time addressing enrollment requirements, which vary significantly by state.

This current process causes burdensome, unnecessary delays in providing time-sensitive care, which can cause a child’s condition to worsen. The Accelerating Kids’ Access to Care Act would address these delays by creating an alternative opt-in for provider screening and enrollment where providers in good standing could enroll in multiple state Medicaid programs, allowing them to provide essential, time-sensitive care to children who need it.

A full list of co-sponsors for the House version can be found here and the Senate version can be found here.

 The Gabriella Miller 2.0 Act (H.R. 623/S. 1521)

Since the original Gabriella Miller Kids First Research Act was signed into law in 2014, the Kids First program has progressed toward understanding childhood cancer and disease. The law established the Ten-Year Pediatric Research Initiative Fund and authorized $12.6 million in annual funds for childhood disease research. It has also led to the founding of the Gabriella Miller Kids First Data Resource Center, a comprehensive data resource for research and patient communities meant to advance discoveries.

The reauthorization of this legislation passed the U.S. House of Representatives in July and has been sent to the Senate for their approval. A full list of co-sponsors for the Senate version can be found here.

 The Childhood Cancer STAR Reauthorization Act (H.R. 7630/S. 4120)

First passed in 2018, the Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act was the most comprehensive legislation addressing pediatric cancer in U.S. history. The STAR Reauthorization Act up for approval would provide an additional four years of funding for the program, which:

  • Expanded NCI authorization to collect biospecimen and crucial data for researchers
  • Provided funding to state cancer registries to collect information on childhood and adolescent cancer rates
  • Enhanced resources for researchers studying the late effects of childhood cancer
  • Encouraged collaboration among providers to enhance the quality of survivorship care
  • Funded innovative research models of care for childhood cancer survivors
  • Required the inclusion of at least one pediatric oncologist on the National Cancer Advisory Board

A full list of co-sponsors for the House version can be found here and the Senate version here.

 Clinical Trial Coverage Act (H.R. 8546)

Introduced in July by Reps. Jackie Speier of CA and Michael McCaul of TX, the Clinical Trial Coverage Act of 2022 would require insurers to cover out-of-network routine care for clinical trial participants if no in-network provider is available. This provision would ensure adult and pediatric patients can access clinical trials without paying significant out-of-pocket costs for physician services.

Current federal law already requires private insurers to cover routine services for clinical trials from in-network providers, but some patients may not have an in-network provider who offers access to a particular trial. For these patients, paying the full price for services in clinical trials may be their only option, excluding many from participating in these trials. The Clinical Trial Coverage Act would ensure that many of these patients can finally benefit from potentially lifesaving clinical trials.

PBTF was proud to endorse this piece of legislation when it was introduced. “Clinical trials aren’t a last resort or an after-thought for children with brain cancer. They’re a necessity,” said Courtney Davies, PBTF President and CEO. “Existing treatments are decades old and often do more harm than good to children’s smaller bodies and developing brains. Access to clinical trials and the potential for improved outcomes should not be a financial burden for families who are supporting their children through the toughest battles of their lives. The Pediatric Brain Tumor Foundation whole-heartedly supports the Clinical Trial Coverage Act, and we appreciate Reps. Speier’s and McCaul’s hard work and dedication to children battling cancer and their families.”

PBTF is committed to making kids with brain tumors a national health priority, and these pieces of legislation hold the potential to provide families with much-needed relief and drive new scientific discoveries. You can make your voice heard and help us educate Congress about the need to pass this legislation by signing up to be an advocate with PBTF. Join our efforts at www.curethekids.org/advocate.

President Biden’s Cancer Moonshot Initiative Represents Bold Vision and Leaves Questions Unanswered for Pediatric Cancer Patients’ Families

The Pediatric Brain Tumor Foundation urges government leaders to prioritize the unique and profound challenges of childhood cancer in developing Cancer Moonshot initiatives 

This week on the 60th anniversary of President Kennedy’s historic Moonshot speech, President Joe Biden addressed the country about his vision for another American moonshot: ending cancer as we know it.  

President Biden’s Cancer Moonshot is one of the boldest initiatives in American history, and it reflects his deeply personal understanding of the need to improve the pace of cancer research and eliminate barriers that impact patient families’ access to care.  

We praise the Cancer Moonshot’s emphasis on data-sharing to spur scientific breakthroughs and break down silos that have kept research out of the hands of those who can benefit from access. The Advanced Research Projects Agency for Health (ARPA-H) also holds immense potential to drive biomedical and healthcare breakthroughs for children with brain cancer. We are hopeful that Dr. Renee Wegrzyn will prioritize children and families in her leadership of the agency, and we welcome opportunities for collaboration that will ensure the perspectives of pediatric cancer researchers, patient families, and organizations are included in ARPA-H’s development.    

While President Biden’s Cancer Moonshot will be consequential for everyone affected by cancer, the reality is that the initiatives he outlined will mostly benefit adult cancer patients. More focus on pediatric cancer research is needed to benefit children, adolescents, and their families. 

“Families affected by childhood cancer face unique and profound challenges,” says Courtney Davies, PBTF President and CEO. “The Cancer Moonshot represents a bold vision, and there are many unanswered questions as to what steps will be taken to ensure the voices of pediatric patients’ families are heard in developing the initiatives outlined in President Biden’s speech. To truly end cancer as we know it, policymakers need to understand the challenges facing the childhood cancer community and commit to addressing them.     

report published last week underscored why there’s such an urgent need to dedicate resources to pediatric brain tumors and other childhood cancers. This first-of-its-kind report revealed that more children under the age of 19 are diagnosed with brain cancer, and dying from it, than ever before, while adult brain cancer patients are experiencing a decline in the incidence of diagnosis and mortality rates. 

PBTF is committed to making kids with brain tumors a national health priority, and we need your help in educating legislators and government agencies about the need to increase resources for pediatric cancer patients and their loved ones. Sign up to become an advocate with PBTF 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 learn more about opportunities to meet with your legislators.

About the Pediatric Brain Tumor Foundation
No parent believes their child will be diagnosed with brain cancer. When it happens, no patient, parent, sibling, or survivor should have to stand alone. The Pediatric Brain Tumor Foundation is there for families facing the deadliest and most common childhood cancer, responding with resources and community support that address every family member’s needs. The largest patient advocacy funder of pediatric brain tumor research, PBTF 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.

First-of-its-kind Report Reveals Pediatric Brain Cancer Is Childhood Cancer Community’s Biggest Crisis

Central Brain Tumor Registry of the United States’ Statistical Report Validates Pediatric Brain Tumor Foundation’s Urgent Call for Action to Reverse Brain Cancer Trends in Children and Adolescents

A new report published in Neuro-Oncology exposes an alarming reality for children, adolescents, and families facing pediatric brain cancer across the country. The Pediatric Brain Tumor Foundation (PBTF) funded this first-of-its-kind statistical report by the Central Brain Tumor Registry of the United States (CBTRUS) to increase understanding of the scope and severity of this childhood disease.

The results reveal that pediatric brain cancer is the childhood cancer community’s biggest crisis:

  • More children under the age of 19 are diagnosed with brain tumors, and dying from them, than ever before, while adult brain cancer patients are experiencing a decline in the incidence of diagnosis and mortality rates.
  • There are significant disparities in the incidence of diagnosis and mortality rates among states. While the report doesn’t address the reasons for these disparities, we know that differences in access to treatment, environmental factors, and emphasis on pediatric cancer in state health policies warrant closer study.
  • Pediatric brain cancer doesn’t discriminate but is a disproportionate threat to children of color, who experience lower survival rates than white children.
  • While mortality rates have increased, the need for attention to survivorship is greater than ever. The estimated number of children and adolescents in the United States living with the aftereffects of brain tumors has increased by 45% since 2010.
  • Even as their odds for survival have declined, children and adolescents diagnosed with brain tumors are, on average, living longer. This increase brings a higher demand for health resources and palliative care education for patients, survivors, and their families.

“This report from CBTRUS validates what the Pediatric Brain Tumor Foundation has been saying for years: Pediatric cancer demands more attention and a greater investment in the development of new treatments and resources for patient families,” says Courtney Davies, PBTF President and CEO. “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, research, or financial commitment as adult cancers. The research community, pharmaceutical companies, healthcare policymakers, and funders must do more. Kids’ lives are at stake.”

Pediatric brain cancer presents a complex and unique problem.

There are more than 120 types of brain tumors in need of treatment advancements. Small patient populations for these individual tumor types, insufficient tissue samples, and the lack of research funding have led to an incomplete understanding of this disease.

Progress towards effective treatments or cures is also slow. Treatments developed for adult populations are ineffective for kids or contribute to long-term health complications. Because pediatric brain tumors are a numerically small problem, research scientists and pharmaceutical companies are not incentivized to study them. Meanwhile, the developmental, emotional, and financial impact on children diagnosed with brain tumors and their families is profound.

PBTF provides leadership toward a better future for kids.

PBTF is committed to leading the way toward a future without childhood cancer. This report provides insights that are shaping our response to this public health crisis. As a result of our analysis of the report, we are:

  • Focusing greater attention on state-level health policy and advocating for emphasis on pediatric health.
  • Redoubling our commitment to funding promising early-stage research. Every dollar PBTF invests attracts 12 dollars in follow-on funding.
  • Directing family support resources to states where the need is greatest and where each dollar can make the most difference.

There is no cure for pediatric cancer without collaboration, and we need patient advocacy organizations, pharmaceutical companies, researchers, and caring individuals to walk alongside us as we address the local impact of pediatric cancer. If you have questions about how you can make a difference, email us at [email protected]. Learn more and access the report at www.curethekids.org/cbtrus-report.

About the Pediatric Brain Tumor Foundation
No parent believes their child will be diagnosed with brain cancer. When it happens, no patient, parent, sibling, or survivor should have to stand alone. The Pediatric Brain Tumor Foundation is there for families facing the deadliest and most common childhood cancer, responding with resources and community support that address every family member’s needs. The largest patient advocacy funder of pediatric brain tumor research, PBTF 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.

About the Report and CBTRUS
The CBTRUS Statistical Report: Pediatric Brain Tumor Foundation Childhood and Adolescent Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2014-2018 contains the most up-to-date population-based data on primary brain and other central nervous system (CNS) tumors in children and adolescents available in the United States. It is the first of its kind to represent the pediatric and adolescent population, provide state-level data, and include molecular data for some tumor subtypes. The full report is published in Neuro-Oncology here.

This report was prepared for PBTF by CBTRUS Co-Scientific Principal Investigator Quinn T. Ostrom, Ph.D., M.P.H., and her research team from Duke University School of Medicine in collaboration with Co-Scientific Principal Investigator Jill S. Barnholtz-Sloan, Ph.D., the research staff affiliated with the NCI Division of Cancer Epidemiology and Genetics, and CBTRUS President and Chief Mission Officer Carol Kruchko. CBTRUS, in collaboration with the Centers for Disease Control and Prevention (CDC) and National Cancer Institute (NCI), is the largest population-based registry focused exclusively on primary brain and other central nervous system tumors in the United States and represents the entire US population. Learn more about CBTRUS at www.cbtrus.org.

Comoto Family of Brands Partners with Pediatric Brain Tumor Foundation’s 2022 Ride for Kids to Inspire Communities During Childhood Cancer Awareness Month

For the second year, the Pediatric Brain Tumor Foundation (PBTF) is thrilled to partner with the Comoto Family of Brands as part of the annual Ride for Kids program. This year, Comoto partnered with GEICO to raise $50,000 via the REVER Million Mile Challenge to support PBTF. Additionally, the company will continue to gather donations during the 2022 National Ride for Kids Day being held on September 18. That day, 10% of proceeds across all participating brands (RevZilla, J&P Cycles, and Cycle Gear) will be donated to PBTF, and Comoto will host the Philadelphia Ride for Kids Rally for the second consecutive year. Pediatric brain tumors are both the deadliest and most diagnosed childhood cancer, and Comoto is aiming to surpass its 2021 fundraising total of $305,000 to help support families affected by this disease.

Since 1991, PBTF’s funding, advocacy and leadership have accelerated the number of targeted therapies for children battling brain tumors today, while equipping patient families with the education, financial relief, and emotional support they need to navigate their cancer journey. For over 30 years, the Ride for Kids has been a mainstay of U.S. motorcycle charity events.

Comoto’s mission is to serve the rider, fuel the industry and inspire the community. This partnership ticks all of those boxes by encouraging the entire motorsports community–vendors*, riders, and aspiring-riders– to channel their passion to help kids and their families fight brain cancer.

“We want to create ways for all riders to support the cause by meeting them where they are, physically in our communities, on REVER, online, and in our stores,” says Ken Murphy, CEO, Comoto Family of Brands. “Partnering with the Pediatric Brain Tumor Foundation to support the Ride for Kids is an amazing opportunity to connect the powersports industry and riding community to PBTF’s mission to cure all pediatric brain tumors and transform how children and their families receive care.”

Comoto’s Ride for Kids awareness and fundraising strategy is divided into two areas of focus over the course of the summer. REVER, the Colorado-based powersports app and part of the Comoto Family of Brands, partnered with GEICO to donate 5₵ for each mile ridden in the Million Miles Challenge. Together, nearly 1,250 riders racked up more than 1.2 million miles between June 1 – July 31 leading to the brands donating a combined total of $50,000 to PBTF.

The second focal point is National Ride for Kids Day on September 18. Comoto is once again hosting the official Philadelphia Ride for Kids starting at Comoto headquarters and RevZilla showroom in the Philadelphia Navy Yard (4020 S. 26th St, Philadelphia, PA 19112). Registration will begin at 10 a.m. ET, followed by the opening ceremony at 10:45 a.m. ET. The Ride for Kids begins at 11:15 a.m. ET for riders and the Walk for Kids, a family friendly walk for non-riders, begins at 11:25 a.m. ET. The ride and walk end back at Comoto HQ when refreshments, music, and activities will be provided for all participants from noon to 3 p.m. ET.

“Pediatric brain cancer isn’t a smaller version of an adult problem, yet children with brain tumors receive toxic and ineffective treatments developed more than 40 years ago for adults. The Pediatric Brain Tumor Foundation is grateful for partners like the Comoto Family of Brands, GEICO, and American Honda who understand the urgent need for better treatments and resources that address the unique challenges children, survivors, and their families face,” says Bob McNamara, PBTF’s National Director of Fundraising and Community Engagement. “Through National Ride for Kids Day, the motorcycling community has the chance to change families’ lives and end the deadliest childhood cancer.”

For more information on the Pediatric Brain Tumor Foundation, please visit curethekids.org. For more information on the Ride for Kids and Comoto, please visit revzilla.com/ride-for-kids-2022.

* 2022 sponsors: Alpinestars USA, Cardo Systems, Inc., Dunlop Tires, HJC Helmets, Michelin Tires, REV’IT!, Sena Technologies, Inc., Shoei, Tucker, Namz/Letric Lighting, HogWorkz, NFP, Culture Amp, Big Hairy Dog, SmartLogic, FullStack Labs, Lauretano Sign Group, Canterman Construction Services, Vintage Law, LLC, Blu Arc Design

About the Pediatric Brain Tumor Foundation
No parent believes their child will be diagnosed with brain cancer. When it happens, no patient, parent, sibling, or survivor should have to stand alone. The Pediatric Brain Tumor Foundation is there for families facing the deadliest and most common childhood cancer, responding with resources and community support that address every family member’s needs. The largest patient advocacy funder of pediatric brain tumor research, PBTF 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 Comoto Family of Brands
Comoto is America’s largest and fastest growing omni-channel platform in the powersports aftermarket-products industry, dedicated to advancing the experience of powersports enthusiasts around the globe. Comoto’s brands, RevZilla, Common Tread, Cycle Gear, J&P Cycles, and REVER, deliver premium products, dedicated expertise, engaging content, and passionate customer support of the rider community through best-in-class eCommerce and retail experiences.

Pro Football Hall of Famer and PBTF Special Ambassador Bryant Young Inspires International Audience With Tribute to Son Colby

When San Francisco 49ers’ legendary defensive lineman Bryant Young was enshrined in the Pro Football Hall of Fame on Saturday, Aug. 6, his poignant eight-minute speech moved the crowd and everyone watching on television and online with emotion.

After thanking family, teammates, friends, and opponents in his heartfelt words, Bryant turned his thoughts to his son, Colby, who passed away of pediatric brain cancer at age 15:

“Colby sensed where things were heading and had questions. He didn’t fear death as much as the process of dying. Would it be painful? Would he be remembered? We assured Colby we’d keep his memory alive and continue speaking his name. On October 11, 2016, God called Colby home. Colby, you live on in our hearts. We will always speak your name.”

Bryant ended his speech with lessons he has learned on his journey: “From my pain, I found purpose. Letting someone grab my hand is as important as reaching for theirs. In an isolated world, personal connections matter more than ever. I keep my gaze on Christ and pour myself into good works, including the Pediatric Brain Tumor Foundation.”

All of us at PBTF are honored to walk alongside the Youngs and keep Colby’s memory alive. Bryant, as a PBTF Special Ambassador, and his wife Kristin, as the Vice Chair of PBTF’s Board of Directors, are incredible partners in supporting our mission to help families and end the deadliest and most common childhood cancer.  We are grateful to have partnered with them throughout Bryant’s Hall of Fame Enshrinement Week to raise awareness about the urgent need for more research and better treatments.

As Childhood Cancer Awareness Month approaches in the coming weeks, PBTF will be sharing new information about how pediatric brain tumors are impacting families at both the state and national levels. You can sign up to receive emails about this news, resources for families, and ways to get involved at www.curethekids.org/stay-connected.  Members of the media interested in running a story about this information and how organizations like PBTF are addressing childhood cancer by funding research and providing direct support to families can reach Amanda Hicken, National Director of Brand Strategy and Integrated Marketing, at [email protected].

No family should have to stand alone on their brain cancer journey. PBTF will continue to honor Colby’s name by standing with families today, tomorrow, and every day to come.

You can join Bryant and Kristin Young in supporting PBTF’s mission of a world without childhood brain cancer by donating at team.curethekids.org/bryantyoung. If you or a family you know has been affected by a child’s brain tumor diagnosis, we’re here to help. Contact our Family Support team today at 800-253-6530, ext. 306 or [email protected]

About the Pediatric Brain Tumor Foundation
No parent believes their child will be diagnosed with brain cancer. When it happens, no patient, parent, sibling, or survivor should have to stand alone. The Pediatric Brain Tumor Foundation is there for families facing the deadliest and most common childhood cancer, responding with resources and community support that address every family member’s needs. The largest patient advocacy funder of pediatric brain tumor research, PBTF 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.

Class of 2022 Pro Football Hall of Fame Enshrinee Bryant Young and Family Partner with Pediatric Brain Tumor Foundation to End Childhood Brain Cancer

San Francisco 49ers legend and University of Notre Dame alum Bryant Young never missed an opportunity to put in the work, be a leader, and have faith that his family and teammates stand with him. This August, Bryant will receive his gold jacket, bronzed bust, and place in NFL history as one of the Pro Football Hall of Fame’s Class of 2022 Heroes of the Game. But now that his moment in Canton has arrived, there is one person missing in the celebrations – his son Colby, who passed away at the age of 15 following a long and difficult battle with brain cancer.

Shortly before he passed away, Colby organized a “Change for Change” fundraiser to benefit the Pediatric Brain Tumor Foundation (www.curethekids.org), raising more than $50,000 with the help of his high school Charlotte Christian. Today, Bryant, his wife Kristin, and their family carry on Colby’s legacy by partnering with PBTF to help families facing the deadliest and most common childhood cancer.

“My family takes every opportunity to honor Colby, share our family’s story, and carry on his legacy,” says Bryant. “Twenty-two was his favorite number, and this year is representative of him. It is such an incredible honor to be in the Pro Football Hall of Fame’s Class of 2022, and we want to use this moment for a greater good — to remember Colby and help other families facing brain cancer.”

Children and teens with brain cancer receive toxic and ineffective treatments developed over 40 years ago for adults, even though science has shown pediatric cancer is different and often more aggressive than adult cancers. Far too many children, like Colby, don’t survive, and survivors face debilitating, long-term health problems. Yet, childhood brain cancer takes a backseat in research and resources because it’s considered a rare disease. As the Youngs and so many other families know firsthand, the impact on patients and their loved ones can’t be measured simply by the number of diagnoses.

To raise awareness about the urgent need to stand with pediatric brain tumor patients, survivors, parents, and siblings, the Youngs have partnered with PBTF to produce a public service announcement that will air before and during the Pro Football Hall of Fame’s Enshrinement Week (Aug. 4-7).

Bryant and Kristin have also invited a 14-year-old brain tumor survivor from Indiana to be their special guest and PBTF’s behind-the-scenes ambassador in Canton. An up-and-coming actor and musician who lives near where Bryant grew up, Zion will share about his brain tumor journey and Hall of Fame experience over PBTF’s YouTubeFacebookInstagram, and Twitter channels throughout Enshrinement Week.

“PBTF is so excited to work with Bryant and Kristin to provide Zion and his mom this once-in-a-lifetime experience, and we’re humbled by the Youngs’ unwavering commitment to help pediatric brain tumor families in honor of Colby,” says Courtney Davies, PBTF CEO and President. “Families like Zion’s and Colby’s go through the unthinkable, and the Youngs’ continued partnership and generosity ensure no family will have to walk alone through their battle. Bryant is truly an inspiration to everyone who knows him, and the PBTF community is thrilled to cheer him on as he’s enshrined in the Pro Football Hall of Fame this August!”

You can join Bryant and Kristin Young in supporting PBTF’s mission of a world without childhood brain cancer by donating today at team.curethekids.org/bryantyoung. If you or a family you know has been affected by a child’s brain tumor diagnosis, PBTF is here for you from the moment symptoms start, along every step of the journey. Call our Helpline today at 800-253-6530, x306 to connect with resources and our community of family support.

About the Pediatric Brain Tumor Foundation
No parent believes their child will be diagnosed with brain cancer. When it happens, no patient, parent, sibling, or survivor should have to stand alone. The Pediatric Brain Tumor Foundation is there for families facing the deadliest and most common childhood cancer, responding with resources and community support that address every family member’s needs. The largest patient advocacy funder of pediatric brain tumor research, PBTF 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.