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CC Community News Digest (week of August 10-16)

August 16, 2020
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Assorted news links from the last week: INCB, WHO and UNODC Statement on Access to Internationally Controlled Medicines during COVID-19 Pandemic FDA Issues Complete Response Letter for Pedmark  An important step forward for mitigating the risk of life-long hearing loss caused by cisplatin AML Survivors at risk for psychosocial impairment Another study from the Childhood Cancer Survivor Study Beirut blast disrupts cancer care for children NPR reports on the wide range of damage from the explosion in Beirut More news about DIPG:  Discoveries point to a new potential treatment approach For childhood cancer survivors, exercise intolerance predicts a range of other health [...] Read more

CC Community News Digest (week of August 3-9)

August 9, 2020
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Assorted news links from the last week: Study Offers Insights on Health Problems among AYA Cancer Survivors Medical trial aims to identify those at risk of heart damage following cancer treatment Australian researchers taking a very broad look at the effect of cancer treatment on heart health. Racial Disparities in Pediatric Cancer Treatment: Black Children Less Likely to Receive Proton Radiotherapy, Forbes US FDA Grants Rare Pediatric Disease Designation (RPDD) to Paxalisib for DIPG, a big win for the Creating Hope Act (which needs to be permanently reauthorized by the end of September) Risk-Stratified Therapy Reduces Late Morbidity, Mortality in Pediatric [...] Read more

International Society of Pediatric Oncology (SIOP) Moves Congress Online

August 3, 2020
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On behalf of the International Society of Paediatric Oncology (SIOP), please note that SIOP 2020 will take place as a virtual congress on the same dates: October 14-17, 2020.  Additionally, Late-Breaking Abstract Submission is open until August 26, allowing everyone to share their research from wherever they are based.   SIOP 2020 Virtual Congress October 14-17, 2020 www.siop-congress.org   In light of the continuing uncertainty about the evolution of the COVID-19 pandemic, we have decided to transform SIOP 2020 into a virtual congress, taking place on the same dates: October 14-17, 2020. With updated registration rates starting from EUR 25, […]

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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

FDA Approves Gemtuzumab Ozogamicin for CD33-Positive AML in Pediatric Patients

June 16, 2020
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On June 16, 2020, the Food and Drug Administration extended the indication of gemtuzumab ozogamicin (MYLOTARGTM, Wyeth Pharmaceuticals LLC) for newly-diagnosed CD33-positive acute myeloid leukemia (AML) to include pediatric patients 1 month and older.   Read More Here On June 16, 2020, the Food and Drug Administration granted accelerated approval to pembrolizumab (KEYTRUDA®, Merck & Co., Inc.) for the treatment of adult and pediatric patients with unresectable or metastatic tumor mutational burden-high (TMB H) [≥10 mutations/megabase (mut/Mb)] solid tumors, as determined by an FDA-approved test, that have progressed following prior treatment and who have no satisfactory alternative treatment options. Read [...] 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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Day One Biopharmaceuticals

May 21, 2020
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Day One Biopharmaceutical, a start-up biotech company founded with a focus on developing therapies for children with cancer through drug repurposing announced its debut in the market last week.  Its first agent, DAY101, licensed from Takeda Pharmaceuticals, is a targeted treatment for children with low grade glioma, a type of brain cancer. DAY101 is a Phase 2-ready RAF inhibitor that also shows strong potential for other pediatric and adult indications. The company is co-founded by Chief Medical Officer Dr. Sam Blackman (who offered our May webinar) and Acting CEO Julie Grant from Canaan Partners.   You can read more here.   Please look for a […]

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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 Special Community Webinar–Vincristine Drug Shortage Update

October 24, 2019
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Dr. Peter Adamson, Chair of the Children's Oncology Group (COG), shared information that COG has received along with a perspective on childhood cancer drug shortages, including the current situation with vincristine.  We were pleased to join with the Alliance for Childhood Cancer to invite members of the two coalitions and the wider community this Community webinar.  We offered this webinar so that the community could have a better understanding of the shortage, how to work with care providers, how to contact the FDA when problems arise from the shortage, and advocacy steps being taken. PUT_CHARACTERS_HERE Read more

STAR Act Co-Sponsor Map

March 5, 2016
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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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