CAC2 Childhood Cancer Community News Digest (December 5-11)

Assorted News from the Last Week:

For many patients, one of the most antagonizing parts of a hospital visit is paying for parking. Those parking fees aren’t just an annoyance for the sick and injured, according to a new paper in the Journal of Medical Imaging and Radiation Sciences. The charges are actually eating into their financial well-being, particularly for people who have cancer and have to make frequent visits to the hospital for treatments like radiation and chemotherapy.

Children diagnosed with diffuse midline gliomas often die within a year after their initial diagnosis since there are no effective treatments yet for this rare cancer. But researchers now have a better understanding of what these tumors look like and can work towards developing new treatment approaches.

The impact of drugs on the gut microbiome in pediatric cancer patients should be taken into consideration regarding trial design and drug prescribing, with potential implications related to gut microbiome modulation. In the near future, testing of the microbiome may provide a tool to help guide initial dose selection and dose adjustments of selected drugs.

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 discuss, network, share knowledge and engage with our international, multi-stakeholder community on the latest in paediatric oncology drug development.  Click here for more information.

On February 19-22, 2023, the San Antonio Pediatric Cancer Symposium (SAPCS), hosted by the Greehey Children’s Cancer Research Institute – UT Health San Antonio, in conjunction with the Mays Cancer Center, will bring together some of the most respected childhood cancer researchers from academia and industry to the Marriott Riverwalk; to discuss how today’s advances in basic and translational sciences are impacting tomorrow’s therapies and diagnoses.  Click here for more information.

Recordings of Recent Past Events:

CAC2 Webinar Recording–Hearing Loss from Cisplatin—Multiple Perspectives on the New FDA Preventative Treatment OptionDr. Lori Wiener, head of Psychosocial Support & Research Program and co-leader of the Behavioral Health Core at NCI was featured in a SIOP webinar on December 9 that highlighted women leaders in pediatric oncology.  Watch Here.

The National Cancer Institute Childhood Cancer Data Initiative (CCDI) hosted a virtual workshop on November 18.  The topic was Advancing a National Initiative for Rare Cancers in Children, Adolescents, and Young Adults.   Slides here. Watch here.

Take Action:

There is an important meeting coming up and we need to get our message across to the members of the Senate HELP (Health Education Labor and Pensions) committee. Please take time and help get this research funding accomplished. THANK YOU! Click Here.

The CAC2 Survivorship Team is building a comprehensive six category Childhood Cancer SurvivorshipToolkit to provide info & resources to help survivors/families.  If you have explored resources for your family, or to assist others, THEY NEED YOUR HELP!  Please add your resources using the appropriate form below:

●      Educational Guidance and Planning https://www.surveymonkey.com/r/GF9NX6M
●      Insurance and Financial Health https://www.surveymonkey.com/r/F96L5CJ
●      Managing Physical Health and Late Effects https://www.surveymonkey.com/r/FN2J8WZ
●      Psychosocial/Emotional Health/Wellbeing https://www.surveymonkey.com/r/FNDGC9K
●      Transitioning to Adulthood https://www.surveymonkey.com/r/F9MBQWZ
●      Wellness/Healthy Behaviors https://www.surveymonkey.com/r/FNVPH8Z
The Truth 365 is looking for 125 committed volunteers to help secure an additional $125 million in federal funding for pediatric research!  On December 1, from the comfort of your home, you can make a huge impact for kids with cancer.  The goal is to show support for Gabriella Miller Kids First Research Act 2.0 through a coordinated social media campaign.  Visit the Event Page for details.

Interested in joining NCI’s #CancerGrandChallenges Advocacy Panel? In this role you would help to shape challenges, and work closely with teams.  The voice, experience, and insight of people affected by cancer is central to the work. Find out about the role:  Visit Grand Challenge for details.

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.

Help make DIPG and childhood cancer history with floor-vote scheduled for H. Res. 404, the DIPG Awareness Resolution!  Here’s all the info on it: https://dipgadvocacy.org/help-us-make-childhood-cancer…/  Quick link to the sign-on form:

 

Applications are now open for the brand new ALADDIN educational programme! Are you a patient advocate interested in paediatric drug development? Apply today and train in regulatory science for childhood cancer drug development:https://aladdin-education.eu/training-course/

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