February Bulletin: Updates from Washington

CHILDREN'S CAUSE DEBUTS BRAND NEW WEBSITE

Thank you for visiting our freshly re-designed website at www.childrenscause.org!

We hope this new site will make it easier for you to:

We would love to hear your feedback.

Become an Advocate: With the launch of the new website comes a chance to join our grassroots action team! Sign up now to be among the first to hear about upcoming advocacy opportunities.

WHITE HOUSE HOSTS PRECISION MEDICINE SUMMIT, ANNOUNCES NEXT STEPS FOR INITIATIVE

We learned concrete details about the next steps for the Precision Medicine Initiative from a White House summit yesterday, which featured remarks by NIH Director Francis Collins and President Obama.
 
"My hope is that [the Precision Medicine Initiative] becomes the foundation, the architecture, whereby 10 years from now we can look back and say that we have revolutionized medicine in areas like cancer or Alzheimer's or some of the diseases that cause so much pain and suffering for so many families all across the country," said the president in panel remarks.
 
Among the key actions announced:

  • Direct Volunteers Pilot Studies Program: NIH announced a new grant to Vanderbilt University and Verily (formerly Google Life Sciences) to explore the optimal approaches for enrolling participants in the PMI Cohort Program, a first step toward reaching its goal of 79,000 cohort volunteers by the end of this year. Dr. Collins also announced the establishment of a PMI Cohort Program Institutional Review Board to ensure responsible oversight of the program.
  • Sync for Science: Working with electronic health record developers, this program will pilot the use of “open, standardized applications to give individuals the ability to contribute their data to research, including for the PMI cohort.”
  • precisionFDA Challenge: FDA launched its first “precisionFDA challenge,” a call to the genomics research community to achieve more consistent and accurate DNA testing results by using the new precisionFDA collaboration platform. This first ‘community challenge’ runs through April 25th.
  • Data Security Policy Principles: The White House released for comment its draft guidelines and framework for ensuring data security within the Precision Medicine Initiative.

Children's Cause is energized by the potential of these initiatives to improve the lives of pediatric cancer patients. We will be carefully reviewing these new developments and urging the Administration to include children with cancer and their families in the framework and the developing cohort. We will work to ensure that valid insights from precision medicine translate into the development of new therapies for children with cancer as soon as possible.

 

RELATED: NIH Director Francis Collins, MD, devoted a blog post this month to reporting on a new study that holds significant promise for the future of precision medicine in pediatric oncology. The study found genetic clues with the potential to refine care and guide treatment in approximately 40 percent of the 150 children with cancer studied.
 
Dr. Collins wrote: "While much more work remains to determine how genomic analyses can be used to devise precise, new strategies for treating kids with cancer, the study provides an excellent sample of the kind of research that NIH hopes to accelerate under the nation's new cancer 'moonshot.'" (NIH Director's Blog)

REGISTRATION NOW OPEN FOR CHILDHOOD CANCER ACTION DAYS

You’re invited to join Children's Cause and the Alliance for Childhood Cancer for the 5th Annual Childhood Cancer Action Days. This two-day event in Washington brings our community together to advocate for important childhood cancer issues currently before Congress.
 
Issues and Advocacy Training will take place Monday, May 16th at the Holiday Inn on Capitol Hill, followed by pre-arranged meetings with Members of Congress and their staff on Tuesday, May 17th. Registration is now open!
 
Visit the Alliance for Childhood Cancer website for more information on registration, scholarships, and hotel reservations.
 
A strong showing of advocates at Action Days 2016 is more crucial than ever, as we anticipate the Childhood Cancer STAR Act will be at a critical point in the legislative process. Sharing your story in Washington this spring will help us tip the scales toward securing passage of this historic, bipartisan legislation, which now has over 180 House and Senate cosponsors!

FROM THE CEO'S DESK

George Dahlman, new CEO of the Children's Cause, takes to the blog to share insights and perspectives from his first month on the job:

Meet George: An Introduction -- Learn more about George's story, his background, and why he believes in the work of the Children's Cause. Plus, learn how you can help us succeed in our mission of finding cures and improving the lives of survivors.

“While cancer research has strong bipartisan support in Washington, the fight for dollars will require a concerted effort by the cancer community - and especially cancer advocates - to keep the heat on their legislators.”

Read on for George's perspective on the climate in Washington as he explores two big questions: What does the National Moonshot Initiative really mean for children with cancer, and how much can be accomplished in an election year? 

IN CASE YOU MISSED IT [QUICK LINKS]

  • DRUG SHORTAGE RECOMMENDATIONS: Pediatric oncologists have issued an "ethical framework" for allocating life-saving oncologic drugs facing shortages. The guidelines aim to help clinicians conserve oncology drugs in times of shortages and guide difficult decisions about prioritization and rationing. “In the absence of a much-needed national advisory statement on how best to allocate scarce drugs, and until policymakers and stakeholders can prevent future shortages, the guidance articulated here supports reasoned decision-making in the face of an actual drug shortage and aims to minimize bias as might occur when individual clinicians or institutions are forced to make difficult, and at times tragic, rationing decisions for children with cancer,” the authors write. (Journal of the National Cancer Institute)

 

  • LATE EFFECTS: An important study about detecting secondary thyroid cancer in childhood cancer survivors finds that physical exams alone may miss a substantial number of nodules. Thyroid cancers account for about 10 percent of secondary cancers in pediatric cancer survivors. "When you have a high-risk population, particularly those who have had head and neck radiation, thyroid ultrasound is really what is needed to screen those patients," said the study's senior author, Sarah O'Brien, MD. (Journal of Pediatric Hematology/Oncology)

 

  • CHILD4CHILD MUSIC VIDEO: On International Childhood Cancer Day (February 15), our friends at the American Childhood Cancer Organization debuted a new music video, We Are One. The powerful song is a compilation of more than 900,000 children and teens who participated by recording themselves singing along. (ACCO.org)

 

  • SURVIVOR STORIES:  On social media this month, we shared stories of two amazing young survivors. Meet Arielle, who was diagnosed with an aggressive and typically fatal brain tumor at just 8 days old, and Emmalea, diagnosed with ovarian cancer at age 11.

 

  • POLICY LETTERS: Children's Cause has signed our name to a variety of policy letters in the past month including support for increased research funding and a thank you letter to Vice President Biden for his leadership of the National Cancer Moonshot. Read these and other recent policy letters here.

GO GOLD WITH BRAVELETS: A NEW WAY TO SUPPORT CCCA

Now you can support the Children's Cause and spread awareness about childhood cancer! When you purchase any item from our Bravelets fundraising page, we'll receive $10 as a donation.

Thank you for shopping and sharing!

Jessica KeanComment