It’s Time for Congress to Put Kids First — Once Again!

Congress is slated to renew a bipartisan bill that extends vital funding for America’s only pediatric cancer research database of its kind — but it’s been needlessly put at risk.

Last year, Bridge To A Cure Foundation announced our emphatic support of renewal of the Gabriella Miller Kids First Research Act. The original bill, which passed in 2014, revolutionized pediatric research and cleared the way for unprecedented progress in childhood cancer and structural birth defect disease spaces by:

Generating one of the largest inventories of molecular and clinical datasets for childhood cancer and structural birth defects research. To date, more than 93,000 samples have been used to generate DNA and RNA data that is paired with imaging and clinical data, all made available to freely empower collaborative research through a centralized, cloud-based data portal.
Receiving wide support from patients and families. The National Institutes of Health (NIH) Kids First Data Resource Center, administered by the Children’s Brain Tumor Network (CBTN), created the infrastructure to house data sets from more than 30,000 participants across the pediatric cancer and structural birth defects landscape.
Accelerating breakthroughs. Kids First Data Resource Center has advanced more than 500 pediatric cancer and structural birth defect research projects and freely provided access to more than 3,200 users.

Bridge To A Cure Foundation understands from direct experience the barriers scientists and researchers face in accessing enough data to make meaningful progress. After all, Bridge To A Cure has helped the Kids First Data Resource Center build-out through roles on both the CBTN Executive Council and its Executive Board, as well as through grant funding. Kids First does nothing less than ensure that children are no longer left behind when it comes to medical advancement. And now, assets are fully in place and being accessed by thousands of users — an explosion of scientific discovery is at the ready! However, the decade-long commitment to put kids first ends soon.

Funding for the NIH Kids First Data Resource Center will expire if Congress does not act by end of year to pass The Gabriella Miller Kids First Pediatric Research Act renewal.

The Kids First Data Resource Center has been a key component in the creation of a national childhood cancer database—which is at the top of the list in the Bridge To A Cure Foundation Action Plan to reduce deaths due to childhood cancer 50% by 2030. Long-time ally CBTN has been identified by the National Institute of Health (NIH) as the model for open science in data-driven discovery. The impacts of Congressional failure to this bill will be devastating for researchers and scientists, kids and families around the world:

$126 million already invested in this successful, one-of-a-kind resource will be wasted.
The Kids First Data Resource Center will be discarded.
Critical funding needed to fulfill Kids First’s life-saving mission will be cut off.
The opportunity to again create an initiative like this one is unlikely.
While much of the data can be transferred to a different data platform, access and types of use of the data become much more limited.
Researchers would once again be forced to analyze adult data to study and treat kids’ diseases blindly.
Potential for effective personalized medicine that can save lives becomes greatly diminished.

Earlier this year, Bridge To A Cure Foundation celebrated when the House of Representatives passed the Gabriella Miller Kids First Pediatric Research Act renewal, designating $125 million to creating a truly comprehensive, open-access, shared-data resource that will benefit the entire childhood cancer and rare diseases research community.

But, the Senate must approve the bill by the end of this year or all of the progress toward better treatments and cures will be lost.

Since this open-access, data-driven model is what the NIH calls the standard, it’s hard to fathom that inaction by just one Senator can dismantle ten years of work by an entire research community focused on cures for America’s #1 killer of kids by disease. But that is what’s happening now. Bridge To A Cure and its coalition met with dozens of Congressional members, and more than 50 have recognized the importance of funding this bipartisan bill through co-sponsorship.

But that isn’t enough to save Kids First. If Senate leaders choose to not include this bill in its end-of-year appropriation package, Congress won’t get the chance to renew the Gabriella Miller Kids First Pediatric Research Act. These few key Senators — Schumer (D-NY), McConnell (R-KY), Murray (D-WA), and Burr (R-SC) — have the power to move the bill forward. They must ensure it does. After all, the lives of hundreds of thousands of sick kids and their families hang in the balance.

Implications of Failure

The significance of the need for reauthorization of the Gabriella Miller Kids First Pediatric Research Act cannot be overstated. Since the pace of data generation and analysis moves so quickly today, a lapse in even just a couple years means the biggest halt to progress ever experienced in the childhood cancer research community. In addition, data left unused becomes increasingly less usable. Millions of dollars will have been invested for nothing. Leaders in collaborative research models like the CBTN will lose the capacity for collaborative research and precision medicine. Most tragic of all, children will suffer and die needlessly.

Join the Twitter Campaign to Put Kids First

Bridge To A Cure Foundation, along with dozens of other childhood cancer advocate groups, are pushing for the Gabriella Miller Kids First Pediatric Research Act to be included in the Senate’s end-of-year appropriations package. We ask for your help and support, now more than ever, to join our efforts in getting through to key Senators.

It’s time to put Kids First—again.

Below you’ll find a 5-day posting plan to insist that our elected officials include the S. 1521 Kids First Pediatric Research Act in their end-of-year funding package. We’ve outlined two different ways you can use Twitter to reach Senate leadership:

OPTION 1: VIDEO MESSAGE
Record a video message to share along with your tweets.

Record your video message using a smart phone or computer camera. Call on Congress to include the Gabriella Miller Kids First Pediatric Research Act act in their end-of-year package.
Place the video link as noted in each tweet below as indicated.
Copy the entire tweet into your Twitter account.
Send.one tweet each day for 5 days.

DAY 1

.@SenSchumer @LeaderMcConnell @PattyMurray @SenatorBurr Please put S.1521 Kids First Research Act 2.0 in your end of year package & put #KidsFirst in #ChildhoodCancer & #RareDisease Research and Data Collection. @smashingwalnuts

DELETE THIS AND PLACE YOUR VIDEO LINK HERE.

DAY 2

Please @SenSchumer @LeaderMcConnell @PattyMurray @SenatorBurr put S.1521 Kids First Research Act 2.0 in your end of year package & put #KidsFirst in #ChildhoodCancer & #RareDisease research and Data Collection. @smashingwalnuts

DELETE THIS AND PLACE YOUR VIDEO LINK HERE

DAY 3

Please put S. 1521 The KIDS FIRST RESEARCH ACT 2.0 in your end of year package @SenSchumer @LeaderMcConnell @PattyMurray @SenatorBurr Lets place #KidsFirst in #ChildhoodCancer & #RareDisease research and Data Collection. @smashingwalnuts

DELETE THIS AND PLACE YOUR VIDEO LINK HERE

DAY 4

Let’s place #KidsFirst in #ChildhoodCancer & #RareDisease research and Data Collection. Please put S. 1521 The KIDS FIRST RESEARCH ACT 2.0 in your end of year package @SenSchumer @PattyMurray @LeaderMcConnell @SenatorBurr @smashingwalnuts

DELETE THIS AND PLACE YOUR VIDEO LINK HERE

DAY 5

#ChildhoodCancer kids are always last in line for new drugs and therapies. Make #KidsFirst by passing S. 1521 Kids First Research Act 2.0. Put it in your end of year package. @SenSchumer @PattyMurray @LeaderMcConnell @SenatorBurr @smashingwalnuts

DELETE THIS AND PLACE YOUR VIDEO LINK HERE

OPTION 2: CHILD’S IMAGE
Share an image of a beloved child that has experienced childhood cancer or structural birth defect.

Upload a child’s image as noted in the tweet below
Select the version of copy appropriate for your situation. Copy the entire tweet into your twitter program and send.
Send one each day for 5 days.

DAY 1

My child (or use first name) didn’t (get sick or die) in vain. @SenSchumer @LeaderMcConnell @PattyMurray @SenatorBurr Please put S.1521 Kids First Research Act 2.0 in your end of year package & put #KidsFirst in #ChildhoodCancer & #RareDisease Research and Data Collection. @smashingwalnuts