CAC2 Childhood Cancer Community News Digest (February 27-March 5)

March 6, 2023 Community News, News Digest

Assorted News from the Last Week:

In March last year, the CCDI Molecular Characterization Initiative (MCI) launched. Since then, it has opened enrollment to children, adolescents, and young adults newly diagnosed with central nervous system tumors, soft tissue sarcomas, and rare tumors—with plans to expand. Results have been returned to more than 750 participants.

Prediction models for kidney failure in long-term survivors of childhood cancer

Researchers have developed a new drug delivery approach that uses nanoparticles to enable more effective and targeted delivery of anti-cancer drugs to treat brain tumors in children

National Cancer Institute (NCI) is launching a first-of-its-kind, public-private partnership to bring clinical and patient navigation support to families facing childhood cancer.

An ambitious paper published in February aims to estimate the economic burden of cancer across 204 countries between 2020 and 2050. The authors find that cancer’s economic burden is equivalent to an annual tax of 0.55% of global GDP.

Risk factors for totally implantable access ports-associated thrombosis in pediatric oncology patients

Upcoming Webinars, Online Opportunities, and Meetings:

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 Conquer Cancer Patient Advocate Scholarship Program provides an opportunity for patient advocates to attend the ASCO Annual Meeting in person and then return to their organizations and communities to share what they have learned.  Applications will be accepted online only, from Wednesday, March 8 at 12:00 PM Eastern Time until 12:00 PM Eastern Time on Friday, March 17. Once the application period opens, a link to the fillable online application will be posted on the Patient Advocate Programs at the ASCO Annual Meeting and Conquer Cancer Patient Advocate Scholarship Program pages of Cancer.Net, ASCO’s patient information website.

The ASCO-Sponsored Patient Advocacy Booth at the 2023 ASCO Annual Meeting will provide 40 complimentary exhibits to patient advocacy organizations.  The 2023 ASCO Annual Meeting will be held at McCormick Place in Chicago, from June 2 –6. Applications for FREE booth space will be accepted between Wednesday, February 1 at 10:00 AM (ET) and Friday, February 10 at 5:00 PM (ET).  Click for more information.

Survey Respondents Needed (click): Understanding emotional distress in childhood survivors of cancer – posted by an NHS psychologist conducting this research with the University of Liverpool and Alder Hey Children’s Hospital. Participants: 12 – 18 yrs & parents

Caretaker Study Participants Needed (click): Michigan State University researchers need your help to understand how to improve food safety recommendations for cancer patients! We are recruiting caretakers of cancer patients ages 18 and younger who are currently in treatment or have been in the past two years. We are looking for participants to complete a 10-minute online survey and optional 30-minute online interview. Participants will be compensated $10 for completing the survey and $25 for completing the interview, in gift cards of their choice. You may contact Carly Gomez () with any study questions.

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 CAC2 Survivorship Team is building a comprehensive six category Childhood Cancer Survivorship Toolkit 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.

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