August 2017: A Look Ahead to Awareness Month
September Preview: Childhood Cancer Awareness Month
Advocates, young professionals, and young adult survivors are invited to join us in Washington, DC on Tuesday, September 12th for a social event at TAKODA Restaurant, from 6-8pm.
Tickets are still available but quantities are limited so order yours today! There is a discount rate for young professionals age 35 and younger, and we are offering complimentary tickets to young adult survivors of childhood cancer. Buy your tickets here, or reply to this email to inquire about a complimentary survivor ticket.
If your organization or company may be interested in sponsoring this event, please see our Sponsorship Benefits (PDF).
Learn more on our event page.
Other Awareness Month Events to Follow:
- Congressional Summit & Alliance Art Exhibit on September 14th: Immediately following the 8th annual Congressional Childhood Cancer Summit is the Alliance for Childhood Cancer Art Exhibit and Luncheon on Capitol Hill. The Alliance is seeking art submissions from children with cancer, survivors or siblings to feature at this event. The submission deadline is September 8th!
- Rally for Medical Research National Day of Action on September 14th: For those unable to make it to DC this September, Rally for Medical Research organizers have made it simple to participate in their day of action from anywhere. Learn more.
- Atlantic Forum on September 15th: We'll be in attendance at this "Children and Cancer" forum at the Newseum the morning of Friday, Sept. 15th. Register here.
- CureFest on September 16th & 17th: Be sure to stop by the Children's Cause exhibit table if you'll be attending this year's CureFest on the National Mall!
RACE for Children Act Becomes Law!
President Trump signed the RACE Act into law on August 19th, as part of the larger FDA Reauthorization Act (FDARA) passed by both chambers of Congress this summer.
We thank the President and Members of Congress for their bipartisan support -- and we especially thank each of you who reached out to your Representatives and Senators throughout this process.
FDARA is a five-year reauthorization of user fee programs, which fund the agency's drug and medical device reviews. The current user fee program is set to expire September 30th.
The childhood cancer community celebrates this hard-fought achievement. RACE Act provisions hail from a blueprint report that grew out of a working group of the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer in 2015-2016. For the past year, childhood cancer stakeholders - including the Children's Cause - have been involved in intensive bipartisan, bicameral negotiations with Congressional champions to make these recommendations a reality.
This legislation calls for patients to be part of the discussion with FDA about what drugs should be developed for kids. Children's Cause will continue to be at the table speaking up for our kids, and we continue to rely on your support to make us a stronger voice in Washington.
Children's Cause Calls on Congress to Pass Clean CHIP Renewal
The current Children’s Health Insurance Program (CHIP) is set to expire onOctober 1st and - if not renewed - millions of vulnerable children would face a loss of critical health insurance coverage.
While most states could manage to keep CHIP running briefly past the October 1stexpiration of federal funding, advocates have noted there will be disruptions to the program before states exhaust that funding. Some 36 million children in this country are covered by Medicaid and/or CHIP. Approximately one-third of children with cancer depend on these programs for their treatment.
As advocates for children with cancer, we're asking Congress to pass a clean, five-year CHIP renewal without any extraneous, complicating attachments. Learn more and take action.
STAR Act: Seeking Senate Support from Key States
The Childhood Cancer STAR Act is the most comprehensive childhood cancer legislation ever taken up by Congress. This bipartisan legislation will advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing enhanced resources for survivors.
While 60% of Members in the House of Representatives currently support this legislation, just 20% of the Senate has signed on as a cosponsor. This month, as part of a coordinated Alliance for Childhood Cancer effort, we specifically targeted eleven Senators from the states highlighted on this map (AK, CO, IA, NE, NV, OH, PA, KS, SC, TN, WI).
We heard from these offices that constituent feedback is critical -- please share this link with anyone you know from one of these states.
Quick Links: Recommended End-of-Summer Reading
- 'Breakthrough' Leukemia Drug Also Portends 'Quantum Leap' in Cost,Kaiser Health News (8.23.17): "When doctors talk about a new leukemia drug from Novartis, they ooze enthusiasm, using words like 'breakthrough,' 'revolutionary' and 'a watershed moment.' But when they think about how much the therapy is likely to cost, their tone turns alarmist..."
- HPV Vaccine Uptake Lags in Childhood Cancer Survivors, MedPageToday(8.25.17): "Survivors of childhood cancers had significantly lower rates of vaccination against human papillomavirus (HPV) compared with the general population, despite having an increased risk of HPV-related morbidity, a study of almost 1,000 patients showed." (Original: Journal of Clinical Oncology)
- Austin company gets FDA orphan drug status in cancer fight, Houston Chronicle (8.18.17): "Curtana Pharmaceuticals announced this week it had received special status from the Food and Drug Administration for a treatment in the fight against glioblastoma in adults and brain tumors in children."
- Mapping Mutations that Drive Tumors in Childhood Cancer Survivors,Neuroscience News (8.6.17): "Neuroscientists have uncovered the genetic basis for why many long-term survivors of childhood cancer develop meningiomas, the most common adult brain tumour, decades after their treatment with cranial radiation." (Original: Nature Communications)
From our blog: 10 Years of Hope -- One Staffer's Reflection (8.28.17)
A long, healthy life for every child diagnosed with cancer -- that's our mission here at the Children's Cause for Cancer Advocacy. And you are a vital part of everything we do!
September is Childhood Cancer Awareness Month, and there is no better time to support our work than now. Your monthly gift of $15 can help us to give voice to children with cancer, survivors and families.