May Bulletin: Action Day brings 200 advocates to DC
RSVP Now: Capitol Hill Briefing on June 23
Children's Cause will host a Congressional briefing with childhood cancer survivors and experts on June 23rd from 12:00-1:30PM.
The afternoon briefing will illustrate and address the access and coverage issues faced by childhood cancer survivors, including recent research findings and best practice recommendations for managing long-term care.
Speakers will include Dr. Smita Bhatia and Dr. Julie A. Wolfson of the University of Alabama, Dr. Anne Reilly of CHOP, and Dr. Monica Gramatges of Texas Children's Hospital.
Learn more here or RSVP to firstname.lastname@example.org.
Childhood Cancer Action Day Propels STAR Act to a New Milestone
The 5th Annual Childhood Cancer Action Days, hosted by the Alliance for Childhood Cancer, took place this month, bringing our community together in Washington to advocate for the Childhood Cancer STAR Act and increased NIH funding.
Approximately 200 advocates attended this year's event, spending a full day in advocacy training followed by a day of pre-arranged visits with Congressional offices. Around the country, advocates joined in from home by asking Congress to #StepUp for the #STARAct.
Your Action Day efforts helped us reach a big milestone: more than half of the House of Representatives now supports this life-saving legislation!
One advocate in attendance, Stacie Ritter, shared her take on the experience with us. Read our blog for Stacie's perspective on this year's Childhood Cancer Action Day.
Children's Cause Endorses ACE Kids Act
The Children's Cause for Cancer Advocacy is proud to be supporting the Advancing Care for Exceptional (ACE) Kids Act, which would improve care for approximately two million children with medical complexities in the Medicaid program.
Children with cancer, like children with other medical complexities, often see multiple specialists and a variety of physicians. There are over 30,000 children with cancer covered by the Medicaid system and the specialized care they require often takes them across state lines. Under the current Medicaid system, parents of children with cancer and other multiple, life threatening disabilities struggle to coordinate the complex, multi-state care of their kids. Only federal legislation can fix the fragmented system for children with medical complexity.
We are honored to join the nation’s leading children’s hospitals, along the Children’s Hospital Association, to support this legislation, which is voluntary for states, families, children’s hospitals and other providers.
Learn more about this bill:
Quick Links: Recommended Reading
- Keeping Cures on the Shelf: Our own George Dahlman, CEO of Children's Cause, wrote a perspective piece on drug shortages in this month's Journal of Clinical Pathways.
"Ultimately, the mitigation of drug shortages will be the result of vigilance on the part of all stakeholders. Maintaining that awareness and managing a quick response system requires that doctors and families become involved in the policy process that makes it work and the rapid reporting of individual instances." (Journal of Clinical Pathways / May 2016)
- Rare Tumors May Cause ADHD-like Symptoms: A new study suggests that some kids diagnosed with a hyperactivity disorder who also have high blood pressure may instead have a rare tumor - pheochromocytoma or paraganglioma - causing ADHD-like symptoms. (NIH, May 16, 2016)
- Poliovirus Therapy May Treat Glioblastoma: The FDA granted 'breakthrough' designation to a treatment modified from poliovirus that shows promise for treating advanced glioblastomas. The therapy is currently being investigated in adults but researchers at Duke hope to expand their trials to pediatric brain tumor patients by the end of this year. (OncLive, May 16, 2016)
Childhood Cancer in the Spotlight:
- From The New York Times Magazine's Cancer Issue: The Improvisational Oncologist & When Do You Give Up on Treating a Child with Cancer?
- Humans of New York profiled children with cancer for two weeks and raised $3.7 million in a viral fundraiser for Memorial Sloan-Kettering Cancer Center: HONY Pediatric Cancer Series
Children's Cause Achieves GuideStar Platinum Status
Children's Cause is proud to be one of the first organizations to receive the Platinum Seal of Transparency from GuideStar, the world's largest source of nonprofit information. GuideStar recently launched the Platinum participation level to help nonprofits celebrate their results with new metrics to report on our progress.
We're proud to use GuideStar Platinum to share our full and complete story with the world. We achieved Platinum by completing GuideStar's preceding participation levels of Bronze, Silver, and Gold. Each provided stakeholders with increasingly detailed organizational information ranging from basic contact information to programmatic details.
Check out our updated #GuideStarPlatinum profile here: