Advocacy

Department of Defense Congressionally Directed Medical Research Program

Rally is spearheading a collaborative request of a $30 million line item for a Peer-Reviewed Young Adult, Adolescent and Pediatric Cancer Research Program within the Department of Defense (DoD) Congressionally Directed Medical Research Program (CDMRP). Congressman McCaul (R-TX) and Congressman Scott Peters (D-CA) have submitted the appropriations request. So far, over 220 organizations, 550 individual patient advocates, and 50 researchers and oncologists from all across the country are supporting the request.

For a summary of the request, click here. To view the white paper, a detailed report providing more information on the issue, click here.

To view the support letter and signatories, click here.

Support this request

Why do we need your support and signature?

  • Adolescents and young adults (AYA) make up 86% of the active military and when you factor in their spouses and children, more than 90% fall in to the AYA and pediatric population so it only makes sense that there should be a line item specifically to study the cancers that affect this age range
  • The NIH states that cancer is the #1 disease killer of AYA and pediatric citizens. The biology of the cancers this population gets is different from those that affect adults even if they have the same disease name. The NIH also states that this age range is grossly underfunded and that more research needs to be done.

While we did not receive a line item this year, the House of Representatives has requested that research on “cancer of children, adolescents and young adults” receive priority funding from the pre-existing Peer-Reviewed Cancer Research Program in the CDMRP. We now must ensure that Congress keeps this language in the final Defense Appropriations Bill. This is a big step in the right direction. Stay tuned on how you can help!” To view this language in the House Department of Defense Appropriations Bill, click here.

Providing a Voice for Kids with Cancer

Rally helps to raise awareness and increase federal childhood cancer research funding by advocating for legislation that will impact the childhood cancer community. To develop better treatments and ultimately a cure for childhood cancer, it is essential that we work alongside of policymakers.

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Current Legislation & Collaborations Focused on Fighting Childhood Cancer

Race for Children Act

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The RACE for Children Act will enable children with cancer to be treated with the most promising new cancer drugs. This bill is an update of the Pediatric Research Equity Act (PREA). The RACE for Children Act would allow the FDA to require PREA pediatric studies when a molecular target of an adult cancer drug is relevent to a children’s cancer. It would also end the orphan exemption for PREA studies. The RACE for Children Act allows the law to catch up with the science and could give a child one more birthday.

To show your support please sign this petition and send a letter to your Congressman and Senator

The Survivorship, Treatment, Access, and Research Act (STAR) of 2015

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Congress took action and introduced a new childhood cancer bill, the STAR Act, in the House and Senate. Currently, there are over 270 Representatives and Senators who have joined as co-sponsors. Please write to your Congressman and Senator and encourage them to join as a co-sponsor to support this legislation.

Advancing Hope Act

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The Advancing Hope Act will reauthorize the pediatric priority review voucher program of the Creating Hope Act. The Creating Hope Act expired on September 30, 2016 but before the deadline, Congress voted for an extension through December 31, 2016. Under this program, any sponsor that develops a drug or biologic for a rare pediatric disease and receives FDA approval for that drug or biologic also receives a voucher. This would result in the drug or biologic getting to market many months earlier, creating significant value. Senator Johnny Isakson, Rally Board of Advisor member, is the lead Republican co-sponsor.

Alliance for Childhood Cancer

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We have partnered with more than 20 national patient advocacy groups and professional, medical, and scientific organizations in the fight against childhood cancer. The Alliance for Childhood Cancer provides a forum which meets regularly to share ideas and concerns and to work collaboratively to advance research and policies to improve the lives of families affected by childhood cancer.

How to Be An Advocate for Childhood Cancer Research

 

Send a personalized letter to your Senator or Congressman or call your elected office and ask them to support public policies that will improve the lives of those affected by childhood cancer.

 

Schedule a meeting with a member of Congress if you’re in Washington, D.C or meet with your member when they are in their district office or having a town hall meeting. Download “How to Schedule a Meeting with a Member of Congress”.

 

Encourage your Congressman to join the Congressional Childhood Cancer Caucus or, if they’re already a member, thank them for their dedication and commitment to childhood cancer.

 

Sharing your personal story about why childhood cancer research is important to you is critical. Email your story to erin@rallyfoundation.org.

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