All posts tagged: Advocacy

CAC2 Webinar–Childhood Cancer Advocacy: Action Day 2021

In April's Special Edition CAC2 All-Member Webinar CAC2 Member Danielle Leach (National Brain Tumor Society and the Alliance for Childhood Cancer) highlighted the opportunity for online issues and advocacy training and pre-arranged Zoom meetings with Members of Congress and their staffs.  Action Day 2021 promises to be very exciting. Thanks to a fully virtual setting, more advocates than ever can participate in effective, meaningful interactions with members of Congress and their staff.  Please register to participate in Action Day activities and advocate virtually for the pediatric cancer community. Action Day Registration Training, April 20, 1:00-3:00 ET Action Day Virtual Hil [...] Read more

CAC2 Member Blog–Don’t let HOPE die in the US Senate!

By CAC2 Member Joe Baber If the Creating Hope Act (S. 4010) does not pass the Senate by December 11, THIS YEAR we will lose the best tool we have ever had to inspire drug developers to produce Childhood Cancer and Rare Pediatric Disease drugs. This bill has produced 26 drugs in the last eight years, including two childhood cancer drugs. This is half of the four drugs ever approved specifically for childhood cancer. Because of the incentives in this bill, for the first time, we now have several kids’ cancer drugs in development.  We cannot allow this bill to die on the Senate floor!  The House passed a version [...] Read more

Guest Blog–September 9 Virtual Day of Action: How to Get Involved

By Guest Blogger Sarah Milberg, Co-Chair of the Alliance for Childhood Cancer and Director of Government Relations and Advocacy for the St. Baldrick’s Foundation Today is the day! The childhood cancer community is joining together today to use our collective voice to build support for funding for the Childhood Cancer STAR Act, the most comprehensive childhood cancer bill ever. Advocates across the childhood cancer community are writing to their members of Congress, posting on social media, and spreading the word to their networks about today’s Virtual Day of Action. If your organization would like to participate, please use these materials so [...] Read more

Guest Blog–Virtual Day of Action: Join Together on September 9

By Guest Blogger Sarah Milberg, Co-Chair of the Alliance for Childhood Cancer and Director of Government Relations and Advocacy for the St. Baldrick’s Foundation For nearly 10 years, childhood cancer advocates from around the country have come to Washington, D.C. to participate in the Childhood Cancer Action Days.  Action Days brings our community together to advocate for important childhood cancer issues currently before Congress.  As a result of our advocacy, we have seen many important childhood cancer policies, like the Childhood Cancer STAR Act, become law.  Due to the COVID-19 pandemic, our plans for Action Days had to change this [...] Read more

Rally for Medical Research, 2020

Rally for Medical Research, 2020, an annual AACR advocacy event, will take place as a completely virtual event! Schedule of Events Thursday, September 10 1:00 pm – 2:00 pm EDT Virtual Training for all Rally Hill Day Participants Wednesday, September 16 5:30 pm – 6:30 pm EDT Virtual Reception to Celebrate Medical Research Thursday, September 17 9:30 am – 5:30 pm EDT Rally for Medical Research Virtual Hill Day Meetings with House and Senate offices will take place via phone/video conference. Participants in times zones other than EDT will have their meetings begin at 9:30 am in their local time [...] Read more

CAC2 Webinar–An Ounce of Prevention, A Lifetime of Health: Childhood Cancer Prevention Initiative

Dr. Margaret Kripke, Professor of Immunology and Vivian L. Smith Chair Emerita at the University of Texas M.D. Anderson Cancer Center and Dr. Philip Landrigan, Professor of Biology at Boston College and Director of the Program for Global Public Health and the Common Good joined CAC2 Members Jonathan Agin (Max Cure Foundation), Mary Beth Collins, and Anne Robertson to discuss a soon-to-be unveiled childhood cancer prevention initiative. This informative webinar allowed CAC2 members to learn the basics about preventing childhood cancer and the vulnerabilities to environmental toxins and current treatment regimens experienced by children. The panel discussion provided an overview about [...] Read more

Childhood Cancer and Prevention – The Time is Now

Survivorship Matters Blog By CAC2 Member Mary Beth Collins My introduction to the idea of prevention and childhood cancer didn’t come from a yearning for advocacy and systems change. It also didn’t come years after my son was diagnosed, with a desire to help other parents learn how to nurture healthier environments for their children. It was thrust upon me during my son’s neuroblastoma treatment, by prospective buyers of our house. Somehow, they not only found out that my son was in cancer treatment, but they also found out the type of cancer he had. The couple had researched environmental toxins [...] Read more

Community News: Update on Federal Childhood Cancer Appropriations Process

Update from our colleagues at the Alliance for Childhood Cancer (July 13, 2020): The House Appropriations Committee agreed to fully fund the Childhood Cancer STAR Act and the Childhood Cancer Data Initiative again this year. Notably, the Senate has historically championed our cause for STAR funding, so this development in the House shows an even stronger commitment from Congress for our research priorities. This step is important to our requests being included in the final appropriations package when Congress considers the next budget. Here are some key sections related to childhood cancer:   STAR Act – The Committee includes no [...] Read more

AACR Sponsored Listening Session with FDA

The American Association for Cancer Research (AACR) and the U.S. Food and Drug Administration (FDA) recorded a listening session on May 27, 2020 for patient advocates to learn more about cancer clinical trials during COVID-19.  The session is about 45 minutes, with the pediatric questions at about minute 25.5, minute 37, and minute 41.   FDA Listening Session:  Oncology and Covid-19

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CAC2 Member Blog–#Moonshot4Kids

By CAC2 Member Janet Demeter, Jack's Angels Did you know that brain cancer is the leading cause of death in children with cancer?  It’s also one of the least-funded areas of cancer research.  DIPG, diffuse intrinsic pontine glioma, is perhaps the deadliest of them all.  The experience of DIPG is a terrible wake-up call:   with no viable solutions, the discovery that profits and numbers count more than the value of your child’s life, DIPG exemplifies in a profound way the experience that so many children with cancer and their families endure–to watch their children die in utter helplessness. We would [...] Read more