January Bulletin: What's New in 2019


Last Chance to Register for January 30th Webinar
Join us at 3pm Eastern time tomorrow for Hope on the Horizon, a free webinar featuring information about the latest ground-breaking developments in childhood cancer research. We are fortunate to be joined by a pediatric oncologist, a CAR-T researcher, and a pharmaceutical representative.

We hope you'll join us for this educational and informational hour. Sign up now.

Even if you can't make it at the scheduled time, we encourage anyone interested in this topic to register so you receive the recording afterward.

Introduce Yourself to the New Congress
The kick-off of the 116th Congress was overshadowed by the drama of the partial government shutdown, which finally came to a (temporary) end on Friday.

If you haven't had a chance yet, we ask that you take a moment to introduce yourself to your Members of Congress and share with them your childhood cancer story. By making these early introductions, you set the stage for ongoing communications with your Member — and make sure they know early on that constituents in their district care deeply about children with cancer and childhood cancer survivors.

We’ve made this introduction easy by providing the template and form on our website: take action here.

If you have existing relationships with any Member of Congress, please take a moment to let us know. Identifying our advocates with Congressional contacts helps us do better targeted advocacy on key issues that impact kids with cancer.

Action Days is March 26 & 27: Registration Now Open
You're invited to join the Children's Cause and the Alliance for Childhood Cancer for the 8th Annual Childhood Cancer Action Days on March 26th and 27th in Washington, D.C.

Issues and advocacy training will be held on Tuesday, March 26th at the Renaissance Arlington Capital View Hotel in Arlington, Virginia. The following day will include pre-arranged meetings with Members of Congress and their staff on Capitol Hill to discuss important childhood cancer issues currently before Congress.

Interested participants are encouraged to register early. There will be a limited number of assistance scholarships for those whose representatives are members of the House or Senate Appropriations Committees. Scholarship applications are available here and are due on February 22nd: 

STAR Act Implementation Update
The Childhood Cancer STAR Act was signed into law last year. This year, we start to see the real impact of all of our hard work!

Earlier this month, the National Cancer Institute announced that they are accepting applications in response to a funding announcement titled “Improving Outcomes for Pediatric, Adolescent and Young Adult Cancer Survivors” (RFA-CA-19-033)

This Funding Opportunity Announcement (FOA) is directly associated with the STAR Act -- and the Biden Cancer Moonshot Initiative. This FOA requests applications from investigators to develop and test interventions that prevent, mitigate or manage adverse outcomes in pediatric and/or AYA cancer survivors and/or evaluate models of care that strengthen coordination, continuity, and quality, or that reduce access barriers to needed services including follow-up care, and that improve outcomes across the survivor's lifespan.

NCI plans to provide a $4.8 million total annual set aside for the RFA ($25M 5-year total). The RFA includes two receipt dates, March 2019 and January 2020. Additionally, NCI is exploring opportunities for a future program announcement that will continue to promote areas highlighted in the STAR Act and solicit both observational and intervention studies to address the full spectrum of research priorities in pediatric/AYA cancer survivors.

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Coming Soon: 2019 College Scholars Application
The Children's Cause will begin accepting applications for our 2019 College Scholars Program in early February. If you or someone you know may be interested in applying, fill out our interest form to be the first to know when the application is available. 

Our College Scholars Program is an annual opportunity for two childhood cancer survivors to gain valuable cancer advocacy experience. Award recipients will receive an academic scholarship of $2,000 for Fall 2019.

Quick Links | Recommended Reading

  • A new report on cancer trends over the past 25 years shows that childhood cancer incidence rates have increased by 0.7% per year since 1975 but death rates have steadily declined. Still, an estimated 1,190 children diagnosed this year will not survive. (ABC News, 1.8.19)

  • A recent report from Georgetown's Center for Children and Families revealed an alarming healthcare trend: for the first time in nearly a decade, the number and rate of uninsured children in the United States increased. (CCF, 11.28.18)

  • Our take on the ACA Ruling in Texas v. US: What does it mean? (CCCA Blog, 12.21.18)

  • A new study finds that only a minority of pediatric palliative care outcome measures include patient-reported outcomes and less than a third of the evaluated studies included quality of life measures, defined as “having fun or experiencing events that added meaning to life." (Pediatrics, 1.19)

Through January 31, 2019, AmazonSmile will donate 15% the purchase price of new print magazine subscriptions to your charity of choice, a significantly higher percentage than the typical 0.5% that we receive from AmazonSmile purchases!

Use this link to ensure that Children's Cause receives this Amazon donation with your purchase: https://smile.amazon.com/b?node=18541223011

It's tax time: Do you need documentation?
If you need a tax receipt for your 2018 donations to the Children's Cause, please contact Charlcie Steuble at csteuble@childrenscause.org.

Jessica Kean