News & Updates

Surviving Scanxiety in Childhood Cancer Survivorship

Survivorship Matters Blog By CAC2 Member Mary Beth Collins, PREP4Gold SCANXIETY –  just the word generates response in the childhood cancer community. One might tense up, suck in some air, get nauseous, or experience a tightening of the chest. There is no minimizing the concern that families endure before the scanning process and receiving the results that confirm the potential of cancer in your child’s body. It is a very sensitive, stress-inducing part of the childhood cancer journey. What is Scanxiety? Scanxiety – or scan anxiety – is a relatively new term. We didn’t have such a reference when my [...] Read more

CC Community News Digest (October 25-31)

Assorted news from last week: Save the Date:  CureFest 2022 will be held Sep. 24 and 25 in Washington, DC. The World Health Organization (WHO) has published the consensus of a set of indicators to evaluate and monitor the development of palliative care worldwide. The report was presented last week at the 17th Palliative Care World Congress in a joint symposium of the WHO and the European Association for Palliative Care. Approximately 20% of pediatric patients with cancer infected with COVID-19 experienced severe illness, according to data published in The Lancet Oncology. Furthermore, deaths due to the infection were proportionally higher […]

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CC Community News Digest (October 18-24)

Assorted news from last week: CAC2 Ethics Think Tank presented a paper entitled Cultivating Ethically Sustainable Relationships with Stakeholders When Non-Profits Fund Pediatric Cancer Clinical Trials at SIOP. The National Cancer Institute and Cancer Research UK sponsors the Cancer Grand Challenge each year.  This year the scientific committee narrowed the 169 innovative ideas down to a shortlist of just 11 teams, who will now compete for a share of £80m.  A newly launched childhood cancer research initiative called the “Virtual Child” is a finalist. This is a global project that harnesses the power of technology to transform the treatment of pediatric solid tumors. […]

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Finding Families to Serve

Please Note: This is best viewed In Google Chrome   In our October CAC2 All-Member webinar.  Amy Godkin (ASK Foundation) helped us host a panel program that included Kim Buff (Momcology), Heather Held (Pediatric Brain Tumor Foundation), and Robyn Dillon (LCSW, Pediatric Hematology and Oncology, Children's Hospital of Richmond) who spoke on: Finding Families to Serve (Click the title above to view the video) The panelists shared information on their success in the area of finding families to serve and how you can work with treatment centers to become a trusted partner. Finding Families to Serve Video Finding Families to Serve Handout [...] Read more

CAC2 Ethics Think Tank White Paper Accepted at SIOP 2021 (on Saturday, October 23rd)

Access to the most promising pediatric cancer treatments is often achieved by participating in clinical trials. And private, nonprofit organizations have become a significant source of funding for these trials that are often left behind by industry. Drug development for pediatric cancer has expanded in recent years because nonprofits are stepping up. But federal reporting standards do not apply to nonprofits leaving them to try their best and hope for the best. This lack of formal oversight raised questions for a number of CAC2 members about the ethical, legal, and social commitments between non-profit funders and the patient communities they [...] Read more

CC Community News Digest (October 11-17)

Assorted news from last week: CAC2 Ethics Think Tank will present a paper entitled Cultivating Ethically Sustainable Relationships with Stakeholders When Non-Profits Fund Pediatric Cancer Clinical Trials at SIOP 2021 (on Saturday, October 23rd). The National Childhood Cancer Registry (NCCR) issued an update this week of frequently requested incidence statistics based on the International Classification of Childhood Cancer (ICCC) using data from . It includes number of cases, age-adjusted incidence rates, and trends by characteristics including single age at diagnosis, sex, race/ethnicity, period of diagnosis, and cancer site and subsites.  The report contains data on 232,859* tumors in children under age […]

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CC Community News Digest (October 4-10)

Assorted news from last week: The FDA has granted a rare pediatric disease designation (RPDD) to lutetium-177(177Lu)-omburtamab-DTPA for use as a potential therapeutic option in pediatric patients with medulloblastoma, according to an announcement from CAC2 Member Y-mAbs Therapeutics, Inc.,  developer of the product. Cancers in children, adolescents and young adults can be resistant to medical treatments or recur even when initial treatments appear successful.  Findings of a 10-year study led by the Translational Genomics Research Institute (TGen), an affiliate of City of Hope, and in collaboration with the Beat Childhood Cancer Research Consortium, suggest that deeper genomic analysis and therapies […]

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CC Community News Digest (September 27-October 3)

Assorted news from last week: CAC2 Member Mary Beth Collins, highlights the importance of Childhood Cancer License Plates, how they amplify awareness efforts, the advocacy required to create these plates and CAC2’s Childhood Cancer License Plate awareness effort. Gavin Lindberg had an Opinion Piece published in The Washington Post titled “The US Should Invest in Children’s Health.” From the New England Journal of Medicine correspondence: Lorlatinib in a Child with ALK-Fusion–Positive High-Grade Glioma Mount Sinai researchers have developed a therapy that shows promise against acute myeloid leukemia. A new study based on patient samples collected over the past decade by […]

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Taking Childhood Cancer Advocacy on the Road: Childhood Cancer License Plates

By Guest Blogger CAC2 Member Mary Beth Collins, PREP4Gold For the entire month of September the world hears a great deal from the childhood cancer community, feverishly raising awareness, advocating for programs & funding, and sharing stories about treatment, survivorship, and bereavement. Social media posts are in abundance, medical experts and advocates are interviewed, and researchers publish papers with the latest data. Each day of the month, there is a great deal provided about childhood cancer as Childhood Cancer Awareness Month (CCAM) continues to strengthen in message and resolve. Come October 1st, some wonder what can be done to sustain [...] Read more

CC Community News Digest (September 13-26)

Assorted news from the last two weeks: In recognition of Childhood Cancer Awareness Month, NCI Director Ned Sharpless reflected on the progress that’s been made against cancers that largely affect children. New Jersey established the “Pediatric Cancer Research Fund” and an advisory board within the New Jersey State Commission on Cancer Research for disbursement of monies deposited in the fund and provides voluntary contributions by taxpayers on gross income tax returns for pediatric cancer research. Additionally, S3724 appropriates $5 million to the New Jersey Pediatric Cancer Fund. A study of children with cancer identified an association between physical activity, fatigue, […]

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