CAC2 Childhood Cancer Community News Digest (November 26-December 1)

Assorted News from the Last Week:

Last week the FDA reported that it is investigating reports of blood cancers — including life-threatening cases of myelodysplastic syndrome and acute myeloid leukemia — in patients with early, active cerebral adrenoleukodystrophy (CALD) who were treated with elivaldogene autotemcel (eli-cel; Skysona).

Cervical cancer deaths have plunged dramatically among women under age 25, and researchers at MUSC Hollings Cancer Center believe this is likely due to HPV vaccination.

An international research team including researchers from Augsburg University Medicine has made significant progress in the risk assessment and treatment of extracranial malign rhabdoid tumors.

Giselle Saulnier Sholler has spent 20 years working treatments for neuroblastoma, a particularly aggressive form of early childhood cancer.

Tumor characteristics differ significantly among pediatric and adolescent and young adult (AYA) patients with melanoma, with decreasing incidence rates seen among young patients with cutaneous melanoma.

Upcoming Webinars, Online Opportunities, and Meetings:

Join this Ladybug House Lounge Session featuring William Harper, a Communications Specialist and cancer survivor. In his inspiring talk, “When All That’s Left is Hope: What to Do When Your Body Keeps Trying to Die,” William will share his powerful story of resilience and hope on December 2, 7:00 PT.  For more information and to register.

Join in this December 5th for the first-ever International Neuroblastoma Awareness Day! Together, we’ll shine a global spotlight on this rare and aggressive childhood cancer, uniting researchers, advocates, and families from around the world. Click here for more information.

LLS is hosting a virtual education program that will explore coping strategies that caregivers can use to navigate the difficult emotions that come with a blood cancer diagnosis, “Could Humor Help Your Family Cope With a Blood Cancer Diagnosis?” on December 5 at 1:00 pm ET.  For more information and to register.

In honor of National Grief Awareness Week during the first week of December, SAMHSA is hosting two informational webinars with experts in the field of bereavement: the second one is “What to do with the Wounds that Time Does Not Heal?” on December 6 at 1:00 pm ET.  For more information and to register.

Join Dr. Jack Shern, head of the Tumor Evolution and Genomics Section in the Pediatric Oncology Branch at NCI, for a webinar exploring the Molecular Characterization Initiative’s (MCI’s) impact on people with pediatric soft tissue sarcoma on December 10 at 1:00 pm ET. Click here to register (required).

As a training and technical assistance provider of the Centers for Disease Control and Prevention (CDC) National Comprehensive Cancer Control Program, the American Cancer Society is proud to present you a webinar on the topic of “Advocacy vs Lobbying” on December 12, at 3:00 ET. For more information and to register.

Take Action:

Join the community December 5th for the first-ever International Neuroblastoma Awareness Day! This awareness day shines a global spotlight on this rare and aggressive childhood cancer, uniting researchers, advocates, and families from around the world. Through this unified day of action, organizers hope to raise visibility, support life-saving research, and bring hope to the children and families impacted by this disease.  How to Participate:

  • AttendtheGlobalWebinar:Hearfromworld-leadingneuroblastomaexperts. Register HERE.
  • Share on Social Media: Use #NeuroblastomaDay to spread the word.
  • Go Blue: Coordinate with your community to light up landmarks or wear blue on December 5th.
  • ​Join: find resources and ways to join the fight.

The Grayson Foundation and The American Childhood Cancer Organization are partnering to bring a Childhood Cancer Awareness specialty license plate to Tennessee residents.  While Tennessee has several children’s hospital license plates, it does not have a general childhood cancer awareness license plate with a gold ribbon.  This is a simple way to honor all the young warriors across the state who are in treatment, in remission, or in Heaven.  The state requires 1,000 preorders before they will begin to produce and issue the new tag.  Will you please help us by sharing this information with your contacts in Tennessee?  If we do not reach 1,000 preorders by 6/30/25, the tag won’t happen.  The link to preorder a license tag is: https://s.acco.org/Reserve-TN-Plate

If you or someone you know resides in Kentucky, please contact Senator Rand Paul’s office to support H.R. 3391/S. 1624 – The Gabriella Miller Kids First Research Act 2.0 a crucial program that supports research into childhood cancer and structural birth defects. Watch the two minute tutorial video to see how easy it is to do. Then click on the bottom link to complete the letter. The goal is to have 500 emails sent to each of these senators offices between now and Thanksgiving.  After watching the video, click this link below to send the email: https://rebrand.ly/jnpp25v.

 

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