May 2018: STAR Act Passes Congress; College Scholars Announced
Congress Passes the Childhood Cancer STAR Act
Last week, the House of Representatives passed the most comprehensive childhood cancer legislation ever introduced. The Childhood Cancer STAR Act is expected to be signed into law by President Trump this week.
We thank our champions on Capitol Hill for leading the way toward this huge milestone for our community, especially the original sponsors of theChildhood Cancer STAR Act: Senators Jack Reed (RI), Shelley Moore Capito (WV), Chris Van Hollen (MD) and Johnny Isakson (GA) and Representatives Michael McCaul (TX), Jackie Speier (CA), Mike Kelly (PA) and G.K. Butterfield (NC).
We also thank each and every one of you who've reached out to your Members of Congress over the past few months -- and years! Every email, tweet, phone call and meeting from the tireless advocates in our community played a part in this monumental victory for our kids. This has been a true collaborative effort with many organizations working together to get us here. We give special recognition to the coalitions of the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer for their leadership.
The bipartisan STAR Act is designed to advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing enhanced resources for survivors. This legislation is the result of many years of hard work from our Congressional champions, our community at large, and this organization. Its proposals are grounded in solid data, smart analysis, and a robust roundtable process that achieved community consensus on top policy priorities.
What's next? At the Children's Cause, we have already turned our attention to funding, and work is underway to ensure the STAR Act receives the appropriations it needs for implementation. In the coming days and weeks, we'll be asking you to join in that effort. Please continue to follow us onFacebook, Twitter and Instagram for updates and action steps.
Survivor Scholarship Recipients Announced
We are excited to introduce the inaugural class of our College Scholars Program! We congratulate Malachi Thompson and Melissa Peace on their selection as our 2018 College Scholars, among a competitive field of applicants.
About the College Scholars Program: Children’s Cause offers an annual opportunity for two childhood cancer survivors to gain valuable cancer advocacy experience. College Scholars, who receive a $2,000 academic scholarship, agree to complete a project of their choosing related to childhood cancer advocacy.
About Malachi: At age 6, Malachi Thompson was diagnosed with Acute Myeloid Leukemia (AML). Just months after finishing a year and a half of intensive therapy, he relapsed and was successfully treated with an umbilical cord blood transplant from an unrelated donor. Today, Malachi is a high school graduate with plans to study Aerospace Engineering at the University of Alabama in Huntsville. Malachi has been cancer-free for the past ten years because a transplant saved his life. Now, he wants to give back and encourage others to become bone marrow donors. For his College Scholars project, Malachi will organize a bone marrow drive in his local community in Alabama.
About Melissa: Melissa Peace was diagnosed with Non-Hodgkin's Lymphoma her freshman year at Colgate University. Today, Melissa is a medical student at George Washington University's School of Medicine with plans to become a pediatric oncologist. "I want to participate in the College Scholars Program so that I can be an advocate for children with cancer and work to better the field of pediatric oncology research from a legislative perspective," Melissa wrote in her application. As a CCCA College Scholar, Melissa will work to build an advocacy interest group at her medical school, creating a new cohort of informed, engaged voices speaking up to lawmakers about research and healthcare issues that impact children with cancer and survivors.
Find out more about Malachi and Melissa and the projects they'll be taking on this summer and fall : Meet Our 2018 College Scholars.
Registration Now Open for June Advocacy Webinar
Register now for our June 27th webinar "Advocacy Tools and Tactics: How to be the Voice of Change," designed for childhood cancer advocates who want to learn more about effective advocacy practices. We'll hear from several advocates around the country who've been achieving progress around childhood cancer policy issues. This webinar, part of our 2018 Webinar Series, aims to arm you with creative new ideas and impactful tools to take to your own local legislators or statehouse in pursuit of a brighter future for children with cancer.
This webinar is being exclusively offered to members of our Kids Action Network, an active and engaged cohort of childhood cancer advocates. Byregistering to participate, you'll automatically become a KAN member. You can opt out of KAN at any time by notifying us at firstname.lastname@example.org.
PFDD Workshop on Chemo-Induced Hearing Loss
Registration is now open for the September 13th Patient-Focused Drug Development workshop on chemotherapy-induced hearing loss in pediatrics. If you or someone you know is interested in childhood cancer hearing loss, we hope you'll join us this fall in Hyattsville, MD, just outside of DC.
The half-day meeting follows the FDA model for PFDD meetings and will feature a series of facilitated panel and audience discussions, focused on providing the FDA and other stakeholders with patient views on key issues related to burden of the condition, potential treatments, risk-benefit analysis and clinical trials.
Visit www.childhoodcancerpfdd.org to register today. We'll keep you posted as details are finalized, including hotel block information, speakers and the full agenda.
Quick Links | Recommended Reading
- "All of Us" Enrollment Expands: The National Institutes of Health opened national enrollment of the All of Us Research Program this month, holding launch events in diverse communities around the country. (NIH, 5.1.18)
- Advances in Medulloblastoma Screening: Researchers have identifed six gene variations that predispose carriers to developing medulloblastoma, paving the way for new genetic counseling and screening guidelines. (The Lancet, 5.9.18)
- Childhood Leukemia & Germs: A controversial new study suggests that a lack of exposure to germs in infancy may contribute to the development of childhood acute lymphoblastic leukemia. Experts are emphasizing that this is early research, genetics are also a factor, and there is currently no magic formula to preventing ALL. (Nature Reviews Cancer, 5/21/18)
- Good News and Bad News in Childhood Cancer Trends: In its annual report to the nation on cancer statistics, the National Cancer Institute reveals that cancer diagnoses are increasing among American children at a rate of 0.8% annually but survivorship rates are continuing to improve. Between 2010-2014, childhood cancer mortality decreased about 1.5% each year. (NCI, 5.22.18)
Join us for Jazz in June! Tickets are now on sale.
Join us in Washington, DC on June 18th for a reception featuring jazz music from the Eric Byrd Trio! Our Jazz in June event will bring together new and seasoned childhood cancer advocates from 6:30 - 9:00pm at the Hamilton Loft near Metro Center. Tickets are now available, including complimentary admission for childhood cancer survivors.