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

December 19, 2022 Community News, News Digest

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, recently took her wedding photos inside a children’s hospital and Fox News covered the photo shoot.

To optimize pediatric trial development by promoting innovative trial design, Connect4Cancer set up a European multidisciplinary advice service, including the voice of young patients and families, tailored to industry and academia.

Survivors of childhood Hodgkin lymphoma experience accelerated epigenetic aging, with higher rates of neurocognitive impairment in adulthood, compared with their peers who didn’t have cancer, according to data from the St. Jude Lifetime Cohort.

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.

SAVE THE DATE!  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. Registration will open in early 2023.

Recordings of Recent Past Events:

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 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/
HAPPY HOLIDAYS, FRIENDS.  THE NEWS DIGEST TEAM IS TAKING DECEMBER 26 OFF.  SEE YOU NEXT YEAR!

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