CAC2 Childhood Cancer Community News Digest (February 20-26)

February 27, 2023 Community News, News Digest

Assorted News from the Last Week:

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.

About 20% of children with acute myeloid leukemia (AML) experience refractory disease or relapse, despite receiving intensive therapy. Leukemia stem cells (LSC) have the ability to evade chemotherapy and propagate the disease leading to chemoresistance and relapse. Therefore, treatment options that are able to eliminate LSCs are likely to be more effective in prolonging disease- free survival.

The Government Accountability Office released early results of the Research to Accelerate Cures and Equity for Children Act (RACE Act)

Investigators have found that pediatric patients with acute lymphoblastic leukemia (ALL) who lived along the Texas-Mexico border were more likely to die within 5 years than those living in other areas of the state, according to a new study published by Castellanos et al in Cancer.

Patients from the most socially deprived areas had lower rates of overall and cancer-specific survival compared to patients from socially affluent areas.

Upcoming Webinars, Online Opportunities, and Meetings:

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.

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.

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.

Gabriella Miller Kids First Data Resource Center (Kids First DRC). Once again, the Kids First DRC is planning a virtual Community Open House on Wednesday, March 1 from 3:00– 4:00pm/ET.

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.

Recordings of Recent Past Events:

February CAC2 All-Member webinar:  Pediatric Cancer Advocacy In Your Own Backyard

Matthew J. Ehrhardt, MD, MS, pediatric hematologist-oncologist, St. Jude Children’s Research Hospital, discusses the link between modifiable chronic health conditions and social determinants of health with late mortality for survivors of childhood cancer.

CAC2 member Mark Levine hosts a podcast called, “Help and Hope Happen Here” (available on Apple Podcasts, Spotify, and Google Podcasts). Access recent podcasts with CAC2 Members (and visit Help and Hope Happen Here for interviews with other CAC2 members and thought leaders from around the community):

  • Lauren Pawlovich (CAC2 Supporting Organization Member Focused Ultrasound Foundation)

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.

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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