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 […]

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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

CAC2 Childhood Cancer Community News Digest (January 9-15)

Assorted News from the Last Week: Canadian physicians have successfully used an MRI-guided ultrasound to deliver chemotherapy to an inoperable DIPG brain tumor in a child – a world-first for this type of technology. CAR T-Cells for cure in pediatric B-ALL (editorial) Cumulative anesthesia exposure linked to impaired neurocognitive function in pediatric ALL Outdoor artificial light at night and air pollution studied as risks of childhood acute lymphoblastic leukemia Upcoming Webinars, Online Opportunities, and Meetings: Join the ACCELERATE group On February 9 & 10 for this hybrid meeting.  In person attendees will meet in a completely new venue in Brussels to [...] Read more

CAC2 Childhood Cancer Community News Digest (January 2-8)

Assorted News from the Last Week: Day One Biopharmaceuticals shared data recently that a targeted therapy shrank tumors by at least 50% in a majority of children with the most common form of pediatric brain cancer (pediatric low-grade glioma). President Joe Biden signed the Childhood Cancer STAR Reauthorization Act - which aims to improve childhood cancer research and care through survivorship. A clinical trial has resulted in the first approval of a treatment for advanced alveolar soft part sarcoma (ASPS). The immunotherapy drug atezolizumab (Tecentriq) was recently approved by the U.S. Food and Drug Administration (FDA) for the treatment of adults [...] Read more

CAC2 Childhood Cancer Community News Digest (December 19-January 1)

Assorted News from the Last Two Weeks: The Centers for Disease Control and Prevention updated its cancer cluster guidelines. "About 85% of children with cancer survive, but the next question is how they can survive healthy in adult life. Even those children who are quite healthy in childhood can develop long-term cardiac-toxicity disorder, including stroke, decades after their cancer."  The issue is that pediatric cancer patients often recover quickly after treatment and seem just fine, and the toxicity issues do not reveal themselves until decades later. The Comprehensive Cancer Survivorship Act was introduced to address care planning, transition, navigation, reimbursement, [...] Read more

Community News–Year-End Legislative Success for Childhood Cancer

We'd like to congratulate our colleagues at the Alliance for Childhood Cancer, our members, and all the advocates who have worked so long and hard to continue making a difference for all children and adolescents with cancer, their families, and for survivors.  The last legislative week of 2022 has brought many gifts. Both the US Senate and House of Representatives unanimously passed the reauthorization of the Childhood Cancer STAR Act for another five years!     In addition, the final omnibus appropriations package contained all of the hoped for funding! This includes full funding for the Childhood Cancer STAR Act [...] Read more

CAC2 Childhood Cancer Community News Digest (December 12-18)

Assorted News from the Last Week: FDA approves Brentuximab for high-risk Hodgkin Lymphoma in children and adolescents. The Comprehensive Cancer Survivorship Act was introduced to address care planning, transition, navigation, reimbursement, quality, and so much more. It aims to address gaps in survivorship care and develop desperately needed standards to improve the overall patient-centered quality of care and navigation needs of the nation’s 18 million cancer survivors of all ages. Some brides may take photos near a scenic lake, outside a stately chateau or maybe inside an adorable rustic barn.  But CAC2 Member and childhood cancer survivor Riley Stock Wagner, [...] Read more