Assorted news from the last week: CAC2 urges members to support efforts to help children’s hospitals in Beirut in the aftermath of the deadly August 4 explosion. You can read more about the explosions effect on pediatric cancer patients from the New York Times American Association for Cancer Research will hold virtual Rally for Medical Research Event on September 17 Researchers to study chemo brain in children with ALL Childhood cancer survivors with severe hearing loss: significantly increased risk for neurocognitive deficits independent of what type of therapy they receive THON dance marathon goes virtual RACE for Children Act implemented this week
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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
CC Community News Digest (week of August 10-16)
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)
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
CAC2 Member Blog–Lessons Learned from a Childhood Cancer Survivor
By CAC2 Member Mariah Forster Olson, Neuroblastoma Children's Cancer Society As a long-term childhood cancer survivor with numerous late effects, I have had 39 years of experience in the medical field…as a patient. As many of us know, life consists of doctor appointments, blood work, diagnostic tests, procedures, surgeries, and more. All of this can be incredibly difficult, exhausting, and depressing, but I have learned some important and valuable life lessons as a childhood cancer survivor. On June 6, 1980 at the age of one, doctors found a large tumor that occupied the entire right side of my chest. The tumor [...] Read more
International Society of Pediatric Oncology (SIOP) Moves Congress Online
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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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
CAC2 Member Blog–Joining Forces to Bring New Therapies to Children with Cancer
By CAC2 Member Cesare Spadoni (aPODD). “Pharma and biotech companies do not develop drugs for kids with cancer!” How many times have we heard these words within the childhood cancer community? Over the past several decades we have witnessed unprecedented progress in oncology, with an array of innovative and more targeted treatments reaching cancer patients. However, these scientific advances have only partially benefited younger patients. The pharmaceutical industry, in strategic pursuit of bigger financial returns, has traditionally focused on adult oncology indications. As a result, over the past 30 years more than 200 new drugs have been approved by [...] Read more
CAC2 2020 Annual Summit
Over 100 CAC2 members and guests gathered for a special online event on Friday, July 17, 2020 to attend our 8th Annual Summit Speaker Program and Annual Members' Business Meeting. Our volunteer Meetings Team designed a carefully curated two-hour version of our traditional Annual Summit accessible to all. Dr. Doug Hawkins, newly elected Chair of the Children’s Oncology Group, speaking on his vision for COG, with Q&A on how parent patient advocates fit into that vision and The RACE Act on the Eve of Implementation Panel, a conversation moderated by Dr. Stacey Adam (FNIH) featuring Dr. Malcolm Smith (NCI), Dr. Martha Donoghue (FDA), [...] 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