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

March 20, 2023 Community News, News Digest

Assorted News from the Last Week:

Results from a new study show that giving a drug called dexrazoxane (Zinecard) before each dose of doxorubicin substantially decreases the risk that childhood cancer survivors will have treatment-related heart problems in adulthood.

 

Keeping track of pediatric cancer survival and cure fraction estimation may be key in assessing advances in care for the population, according to findings from the EUROCARE-6 study with results published in The Lancet Oncology.

The FDA has granted an orphan drug designation to EP0042 for use as a potential therapeutic option in patients with acute myeloid leukemia (AML) with acquired resistance to FLT3 inhibitors, according to an announcement from Ellipses Pharma.

The FDA announced on Thursday that it has approved the BRAF inhibitor dabrafenib (Tafinlar) combined with the MEK inhibitor trametinib (Mekinist) for the treatment of pediatric patients 1 year and older with low-grade glioma.

Managing aggression in pediatric patients

Upcoming Webinars, Online Opportunities, and Meetings:

The Administration for Children and Families (ACF), Substance Abuse and Mental Health Administration (SAMHSA), and parent, youth, and community leaders for a virtual event designed to provide parents and caregivers with tools and skills they need to support their children’s mental health, March 22 at 6:00 pm ET.  Click for more information and to register.

On Friday, March 24, 2023 from  9:00am – 5:00pm/ET NCI is gathering experts from around the country virtually and at the National Institutes of Health campus for the 2023 Childhood Cancer Data Initiative (CCDI) Annual Symposium. The hybrid event will bring together presenters and panelists to discuss CCDI’s progress and opportunities for the future.  Click here for more information and to register.

Free webinar for siblings of childhood cancer families sponsored by CAC2 Member Ryan’s Case for Smiles:  “What About Siblings?: Understanding and Supporting Siblings of Children with Illnesses and Injuries” on Wednesday April 12 at 1:00 pm EST. Click here for more information and to register.

Registration Open!  The Alliance for Childhood Cancer is excited to announce that Action Days 2023 will return back to Washington, D.C. from April 24-25, 2023. Click here for more information and to register.

MIB Agents Osteosarcoma Alliance FACTOR 2023 Conference brings together the leading osteosarcoma researchers and clinicians, along with patient families and OsteoWarriors (survivors, patients and siblings of OsteoWarriors and OsteoAngels) to Make It Better for those battling this disease.  Click here for more information.

Take Action:

The 2023 Evan Lindberg & Erik Ludwinski College Scholarship Program is now accepting applications!  The program is open to high school seniors who are survivors of high-risk cancers or currently in treatment.  Students must be enrolled in a 4-year undergraduate institution and demonstrate a need for financial assistance. Three (3) $10,000 scholarships will be awarded. Applications are accepted from March 15 to May 1, with winners announced July 1.  Each winner will receive $2,500 in scholarship support their freshman year.  Funding will be renewed annually (for a total of $10,000 over 4 years), if eligibility requirements are maintained.  Please apply here:  2023 Childhood Cancer Survivor Scholarships — The EVAN Foundation.  Contact for more information:  info@theevanfoundation.org

Buddy’s Place offers an 8-week support group each spring and fall. While children and teens engage in goal-oriented activities that are age-appropriate, parents and caregivers participate in a group focused on understanding children’s grief and how to better help the children work through it. The Spring 2023 Session will begin on March 21, 2023 and the Fall 2023 Session will begin on September 11, 2023.  Click here for more information.

The Communication Team at the Childhood Cancer Data Initiative is hoping to identify personal stories from the patient/caregiver/survivor perspective to feature in their monthly newsletter debuting next month.  Each month the CCDI progress update will include three stories of people in the childhood cancer community that either relate directly to childhood cancer data sharing or allow them to highlight a need that CCDI would help meet.  Please email Vickie at of you have a story or would like more information.

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