CAC2 Childhood Cancer Community News Digest (January 30-February 5)

February 6, 2023 Community News, News Digest

Assorted News from the Last Week:

National Cancer Institute (NCI) is launching the Childhood Cancer – Data Integration for Research, Education, Care, and Clinical Trials (CC-DIRECT) to support children and Adolescents and Young Adults (AYAs) with cancer throughout their cancer journey; provide patient navigation support to families seeking information and optimal care; facilitate research participation; and establish a portable, shareable, standardized cancer health record. This means families facing childhood cancer can reach out for support and get connected to excellent care and the opportunity to participate in research through clinical trials and data sharing initiatives.

There are limited therapies available to treat pediatric solid tumors, and therapies are scarcer for rare tumors, according to Catherine Bollard, MD. Over the next 5 years, the development of treatment for these cancers will become an important research focus due to a $25 million grant awarded through Cancer Grand Challenges, a program funded by the National Cancer Institute (NCI) and the Cancer Research UK.

The U.S. Food and Drug Administration (FDA) has granted Orphan Drug Exclusivity to CAC2 Supporting Member Fennec’s PEDMARK® (sodium thiosulfate injection), which is indicated to reduce the risk of ototoxicity, or hearing loss, associated with cisplatin use

Keep up with the latest NCI news on pediatric cancer research

Survival outcomes in young ALL vary by race/ethnicity — White and Asian patients have better survival rates than Black and Hispanic patients.

Upcoming Webinars, Online Opportunities, and Meetings:

We are pleased to invite CAC2 members, associate members, student members, and supporting organizations to our February CAC2 All-Member webinar:  Pediatric Cancer Advocacy In Your Own Backyard  on Wednesday, February 15 at noon ET.  Register Here

The International Replication Repair Deficiency Consortium (IRRDC) is hosting its 3rd educational webinar on Constitutional Mismatch Repair Deficiency (CMMRD) syndrome on February 15, 2023 from 1:30 -3:00pm ET. 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.

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.

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:

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):

Take Action:

The Coalition Against Childhood Cancer (CAC2) is recruiting an Executive Director to join a dynamic, collaborative network of nonprofit organizations, industry partners, and individuals from 39 states and nine countries, supporting and serving the childhood cancer community.  Click for more information.

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: 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

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.

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