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.

 

Related Updates

Pediatric Brain Tumor Foundation Awards More Than $1 Million in New Research Funding to Dana-Farber Cancer Institute

Research News

Pediatric Brain Tumor Foundation Awards More Than $1 Million in New Research Funding to Dana-Farber Cancer Institute

The Pediatric Brain Tumor Foundation (PBTF) proudly announces an infusion of $1 million to help researchers, led by Dana-Farber Cancer Institute’s Drs. Pratiti (Mimi) Bandopadhayay and Rameen Beroukhim, launch a study into a novel therapeutic target and expand their research into overcoming treatment resistance and rebound growth.

Urgent Action Needed: Congressional Hearing on Accelerating Kids’ Access to Care Act

Advocacy Alert

Urgent Action Needed: Congressional Hearing on Accelerating Kids’ Access to Care Act

Recently, the Accelerating Kids' Access to Care Act gained significant momentum in Congress when Charlie, a 12-year-old brain tumor survivor and advocate with the Pediatric Brain Tumor Foundation, testified to the U.S. Senate Finance Committee about the hurdles families face when seeking treatment for their child. Now, to see it become law requires your immediate action.

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