All posts tagged: Advocacy

Community News: Update on Federal Childhood Cancer Appropriations Process

July 15, 2020
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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

May 27, 2020
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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

March 1, 2020
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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

CAC2 Member Blog–Jointly Sponsored Moonshot4Kids Congressional Briefing

February 14, 2020
Collaborative Achievements, Community News No comments yet

CAC2 Members Jack’s Angels, Dragon Master Foundation, Max Cure Foundation, Children’s Cancer Cause, and National Brain Tumor Society joined together with others in the community through the DIPG Advocacy Group to hold the Moonshot4Kids Congressional Briefing on February 13 to raise awareness of H. Res. 114, which “Expressing support for the designation of the 17th day in May as “DIPG Awareness Day” to raise awareness and encourage research into cures for diffuse intrinsic pontine glioma (DIPG) and pediatric cancers in general.” You can read more about the Briefing and H. Res. 114 at CAC2 Blog Post #Moonshot4Kids. According to CAC2 […]

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CAC2 Webinar–Childhood Cancer Advocacy: National and International Voices and Action!

February 11, 2019
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February's All-Member Webinar was presented by Ruth Hoffman, President of Childhood Cancer International and Danielle Leach, Co-Chair of the Alliance for Childhood Cancer. This CAC2 webinar contains details about this year’s celebration of International Childhood Cancer Day happening mid-February and about Childhood Cancer Action Days scheduled this year for March, 26-27 in Washington, DC. For your convenience and so that you can access specific links, the presentation slide decks are posted below. The panelists graciously allowed us to share their slide deck as well. The panelists graciously allowed us to share the ACC Briefing Slidedeck. Read more

CAC2 Webinar–The Role of the IRB in Clinical Trials: What Patients and Families Need to Know — SLIDE DECK

September 22, 2017
Webinars No comments yet
In this month's All-Member webinar, Joanne Salcido of the Pediatric Brain Tumor Foundation introduced and hosted Dr. Marjorie Speers of the WCG Foundation.  The slide deck from the presentation is linked below. Dr. Speers's presentation described the clinical trial process and the role of the IRB in phase 1 – 4 clinical trials. During her webinar, she explained the differences between academic and independent IRBs and the challenges IRBs face when they review multi-site trials. She also described the revised regulations that are likely to go into effect in 2018 and how they should help to reduce the time it takes for an [...] Read more

CAC2 Webinar–The Canine-Kid Connection

November 16, 2016
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In this All-Member Webinar for November 2016, we provided an overview of the compelling case for studying and treating cancer in canine cancer patients – a model of spontaneously occurring disease - the underlying science, and its potential not only to help us better understand and treat pediatric cancer, but also to accelerate the pediatric cancer drug development process. CAC2 Member Ulrike Szalay of Canines -N-Kids explains:  "As we know too well, cancer is the #1 cause of disease-related death in children in most developed countries. At least 1 in 5 will die from their disease, while the vast majority [...] Read more

CAC2 Member Blog–Reflections on the National Cancer Moonshot Summit

August 1, 2016
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By CAC2 Member David Frazer, National Pediatric Cancer Foundation “The Moonshot Summit was an event that gathered the principals within the oncology industry under the inspirational leadership of Vice President Biden.   In my opinion, all politics aside, Mr. Biden portrayed the type of leadership necessary to conduct systematic change to defeat cancer.  Historically, he has always been a champion for public health.   The summit was based on collaboration and change, and Mr. Biden facilitated an effective initiative to drive those focus topics. On June 29, the Vice President gathered 300 cancer experts and advocates to Howard University. Of the 14 advocates and foundations […]

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STAR Act Co-Sponsor Map

March 5, 2016
Blog Posts, Community News No comments yet

Thanks to the many-faceted efforts in the childhood cancer community, the STAR Act has reached a tipping point (173 co-sponsors in the House of Representatives as of March 3, 2016).  This is an important milestone in moving the bill through the legislative process.  In March the focus is to push for even more co-sponsors, with a strong emphasis on Members who serve on the Energy & Commerce Committee.  We want as many Members as possible supporting the bill, so that we can move the bill to a successful committee hearing.  This map will help you locate your Representative: Hovering over or clicking each marker will […]

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