CAC2 Childhood Cancer Community News Digest (August 7-20)

August 14, 2023 Community News, News Digest

Assorted News from the Last Two Weeks:

Latino children are at greater risk of developing certain cancers, and their short and long-term outcomes are often worse than other children with cancer.

Approximately 1 in 15 children receiving cancer treatment in low- and middle-income countries die from treatment-related complications. Although treatment-related mortality has decreased in upper–middle-income countries over time, it remains unchanged in low- and middle-income countries. There is an urgent need for targeted supportive care interventions to reduce global disparities in childhood cancer survival.

The FDA has issued a complete response letter to a resubmitted biologics license application (BLA) for remestemcel-L as a treatment for pediatric patients with steroid refractory acute graft-versus-host-disease (SR-aGVHD).

High gut microbiota diversity before allogeneic hematopoietic stem cell transplantation (allo-HSCT) was associated with significantly better survival outcomes in children.

Researchers have found a potential drug candidate that improved outcomes for patients with a type of childhood brain tumor for which there are no effective treatments. The compound, called ONC201, nearly doubled survival for patients with diffuse midline glioma (DMG) or diffuse intrinsic pontine glioma (DIPG), compared to previous patients.

Starting a new school year is often stressful for many students. For those living with a disability such as hearing loss, this anxiety can be magnified.  Dr. Alison Freeman offers a wealth of expert advice on supporting kids of all ages as they go back to school for another year.

“We are in an era of radiation omission or de-escalation,” said Corey Speers, vice chair of radiation oncology at the University Hospitals Seidman Cancer Center and Case Western Reserve University. “Radiation is perhaps one of the most precise and most effective cancer therapies we have, so it will always play an important role in cancer management, but there are situations now on an individual patient basis where radiation may not be needed.”

Scientists have shown that immunotherapy after stem cell transplantation effectively combats certain nerve tumors in children. Crucially, stem cells from a parent provide children with a new immune system that responds much better to immunotherapies.

From windows to wall art, hospitals use virtual reality to design more inclusive rooms for kids. (gated)

Upcoming Webinars, Online Opportunities, and Meetings:

Day One Biopharmaceuticals invites you to the Day One Advocacy Community Meeting, a semi-annual webinar hosted by Day One to foster communication and information-sharing with pediatric cancer advocates on August 22, 2023, 12-1pm ET.  Learn more and register.

Triage Cancer will offer a webinar on School & Cancer: Going to College on August 24 at 1:00 ET about navigating college and cancer, including how to get help through accommodations, working with professors, and tips for a smooth transition from high school to college.  Learn more and register.

Zoefia Alexandria Green Heart Gala, beautiful night of elegance and celebration to raise funds and awareness for Childhood Cancer/ Brain Cancer, September 15 at 7:00 pm ET.  Learn more and register.

Registration for CureFest 2023 is now open! Register today at:  www.curefestusa.org

MyPART will partner with the Life Raft Group to hold the NIH Pediatric and Wild-Type GIST Clinicat the NIH Clinical Center in Bethesda, MD. The clinic brings patients and families together with expert clinicians and researchers. To learn more about the upcoming clinic, please email BJ Thomas, RN at .

Register for the 55th SIOP in Ottawa, Canada on October 11-14. Experience 4 outstanding days of cutting-edge science, engaging debates, and networking with world-renowned experts.  Learn more and register.

Join top scientific experts, clinicians, researchers, NCI, childhood cancer foundations and advocates, agency officials, and many more for the Inaugural Childhood Cancer Prevention Symposium.  This ground breaking meeting will take place at Children’s National Research & Innovation Campus in Washington, DC on October 25-26th, 2023.  (Registration and meeting details forthcoming shortly).

Recent Recordings

CAC2 Member Swifty Foundation has a new video “ A Journey of Hope – Tissue’s Journey to Improve the Lives of Children with Brain Cancer.”  Tissue is vital to fueling research we all need to better understand how these precious gifts impacting research. Video is produced with minimal branding and is open source for anyone who would like to utilize this as a resource or tool.

Take Action:

An invitation from CAC2 Member Mark Levine: “As I continue to try and raise awareness in the battle against Pediatric Cancer I want to once again thank all of you who have joined my HELP AND HOPE HAPPEN HERE Pediatric Cancer Facebook Group. . . . if any of you would like to come on to my show or know of someone who you think might want to share their story then please let me know. . . . you can email me at . I am also on Instagram and my “handle” ( if that is what you call it) is mark.levine.1654

Children’s Cancer Cause invites teen, young adult, and adult survivors of childhood cancers to participate in their 2023 survivor survey.

Zach’s Bridge is looking for bereaved parents and caregivers to complete a survey to help families facing advanced pediatric cancer. The survey takes less than 5 minutes and will help improve the services that Zach’s Bridge Peers provide. Please share with your organizations and bereaved families you know. Take the survey

Pediatric Cancer legislation needs your support.  Learn more about how to support the Gabriella Miller Kids First Research Act 2.0, the Sawyer Finn ACT, Comprehensive Cancer Survivor Act, Accelerating Kids’ Access to Care Act,and the Give Kids a Chance Act.

The FDA and CTTI announced the call for applications for new members of the Patient Engagement Collaborative(PEC). The PEC is an ongoing, shared forum in which the patient community (PEC members), FDA, and CTTI discuss a variety of topics such as improving communication, education, and patient engagement related to medical product regulation.  This announcement is open to receive a maximum of 75 applications. Applications will be accepted until 11:59 p.m. Eastern Time on August 14, 2023 or until 75 complete applications are received, whichever happens first.  Interested candidates are encouraged to apply early.

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