Guest Blog–Molecular Characterization Initiative (MCI) Continues to Enroll

In March last year, the CCDI Molecular Characterization Initiative (MCI) launched. Since then, it has opened enrollment to children, adolescents, and young adults newly diagnosed with central nervous system tumors, soft tissue sarcomas, and rare tumors—with plans to expand. Results have been returned to more than 750 participants. Data released from the initiative are searchable through the database of Genotypes and Phenotypes and Seven Bridges’ Cancer Genomics Cloud. See Where Can These Data Be Accessed? on the MCI web page for more information about access. Enrollment continues and participation is free. Potential participants must also be receiving care from a […]

Read more

CAC2 Childhood Cancer Community News Digest (February 20-26)

Assorted News from the Last Week: National Cancer Institute (NCI) is launching a first-of-its-kind, public-private partnership to bring clinical and patient navigation support to families facing childhood cancer. About 20% of children with acute myeloid leukemia (AML) experience refractory disease or relapse, despite receiving intensive therapy. Leukemia stem cells (LSC) have the ability to evade chemotherapy and propagate the disease leading to chemoresistance and relapse. Therefore, treatment options that are able to eliminate LSCs are likely to be more effective in prolonging disease- free survival. The Government Accountability Office released early results of the Research to Accelerate Cures and Equity [...] Read more

CAC2 Childhood Cancer Community News Digest (February 13-19)

Assorted News from the Last Week: Investigators have found that socioeconomic deprivation, the presence of modifiable chronic health conditions, and frailty may all independently be associated with increased rates of late mortality among pediatric cancer survivors, according to a new study published by Ehrhardt et al in JAMA Network Open. The findings demonstrated that treating chronic health conditions alone may be inadequate to improve survivors’ life spans without policies to improve local environments. A team of almost 30 experts has compiled the first-ever guidelines on monitoring children for heart damage during cancer treatment. The National Comprehensive Cancer Network (NCCN) has [...] Read more

CAC2 Webinar–Pediatric Cancer Advocacy – From Your Own Backyard

Many think of advocacy as traveling to Washington DC and speaking to their Senators and members of Congress, convincing them to pass legislation like the STAR Act. While this is an essential part of advocacy, there are many things that you can do within your state that do not involve travel or engaging politicians. Ann Ramer presented opportunities for connecting with your local Childhood Cancer Community and highlighted the available tools on the CAC2 member page to support your effort. Ann Ramer, MPH Ann is a mother of four children, two of whom developed multiple forms of cancer. She is [...] Read more

CAC2 Childhood Cancer Community News Digest (February 6-12)

Assorted News from the Last Week: Microchip disruption due to the pandemic is trickling down to impact access to hearing aids. Pediatric cancer survivors appeared at increased risk for late mortality associated with modifiable chronic health conditions, according to study results published in JAMA Network Open. Pediatric rhabdomyosarcoma protocols should include more detailed imaging guidelines. Access matters: lack of resources is associated with increased mortality in childhood cancer survivors. Upcoming Webinars, Online Opportunities, and Meetings: We are pleased to invite CAC2 members, associate members, student members, and supporting organizations to our February CAC2 All-Member webinar:  Pediatric Cancer Advocacy In Your [...] Read more

CAC2 Childhood Cancer Community News Digest (January 30-February 5)

Assorted News from the Last Week: National Cancer Institute (NCI) is launching the Childhood Cancer – Data Integration for Research, Education, Care, and Clinical Trials (CC-DIRECT) to support children and Adolescents and Young Adults (AYAs) with cancer throughout their cancer journey; provide patient navigation support to families seeking information and optimal care; facilitate research participation; and establish a portable, shareable, standardized cancer health record. This means families facing childhood cancer can reach out for support and get connected to excellent care and the opportunity to participate in research through clinical trials and data sharing initiatives. There are limited therapies available [...] Read more

CAC2 Childhood Cancer Community News Digest (January 23-29)

Assorted News from the Last Week: Reporting by the Bureau of Investigative Journalism, in partnership with STAT, reveals that at least a dozen brands of asparaginase for treatment of ALL have been proven to be poor quality.  Ten of them are still on the market. In some cases brands fell well below the standard needed to treat cancer. Many have also been found to contain contaminants such as bacteria that could be harmful to patients. The National Comprehensive Cancer Network (NCCN) clinical practice guidelines for adolescent and young adult oncology have been updated to include Pedmark, a sodium thiosulfate injection, [...] Read more

CAC2 Childhood Cancer Community News Digest (January 16-22)

Assorted News from the Last Week: More about the Food and Drug Administration (FDA) approval of the drug brentuximab vedotin (Adcetris) in combination with chemotherapy for the treatment of some children and adolescents with Hodgkin lymphoma. A clinical trial has resulted in the first approval of a treatment for advanced alveolar soft part sarcoma (ASPS). The NCI Childhood Cancer Data Initiative now includes 46 new data sets with the addition of the GEO, CLIC, PROSPR, ScPCA, and VPCC.  Another resource, "Analytical Tool," has also been added. Clinicians and scientists at the International PPB/DICER1 registry have just published their series of 205 [...] Read more

CAC2 Executive Director Position Now Open!

The Coalition Against Childhood Cancer (CAC2) is recruiting an Executive Director to join a dynamic, collaborative network of nonprofit organizations, industry partners, and individuals from 39 states and nine countries, supporting and serving the childhood cancer community. The Executive Director reports to the Chair and the CAC2 Board of Directors to oversee the day-to-day operations of CAC2, while working collaboratively with CAC2 member volunteers. The Executive Director will supervise the operations and communications staff, engage with members and external stakeholders, and work in partnership with the Board to evolve the CAC2’s strategic vision to fulfill its mission and objectives. The mission of CAC2 is to effectively […]

Read more

CAC2 Webinar–Not For Profit Financial Matters: A Deep Dive into the 990

January's CAC2 All-Member webinar provided an opportunity to clear up some of the confusion the IRS Form 990 can cause for many non-profit organizations. In the first half of this webinar, participants learned key information to complete the 990. The second half of the webinar answered questions from participants. Amy Altholz Amy Altholz is the Partner-In-Charge of RubinBrown’s Not-For-Profit Services Group. She is also a Partner in the Assurance Services Group. Her experience with a variety of not-for-profit clients provides her valuable insight into the industry’s best practices. While working for RubinBrown, Amy participated in the Baker Tilly International Exchange [...] Read more