CAC2 Childhood Cancer Community News Digest (15-28)

Assorted News from the Last Two Weeks:

The Food and Drug Administration (FDA) approved Imbruvica (ibrutinib) for the treatment of children aged 1 year or older with chronic graft-versus-host disease (cGVHD) after one or more lines of systemic therapy, according to a news release from the agency.

FDA drug approvals, pediatrics — 2022 midyear review

Millions of Americans, including those with chemo-induced hearing loss, will be able to buy hearing aids without a prescription later this fall, under a long-awaited rule finalized in August.

CAC2 Members from Swifty Foundation publish in the Journal of Clinical Oncology:  Postmortem Tissue Donation: Giving Families the Ability to Choose

CAC2 Members from LLS publish in Motherly:  Kids are different than adults. Their cancer treatment should be different—and safer

Upcoming Webinars, Online Opportunities, and Meetings:

National Cancer Institute presents Novel Chemical Approaches for Targeting Fusion Oncoproteins, a webinar series, Fridays, 12:00-1:00 ET starting August 19 and continuing through October 21.
On September 1st, MassDOT is lighting up four bridges gold to honor Childhood Cancer Awareness Month in September. These four bridges across Massachusetts will be lit up from sunset to sunrise:  Zakim (Boston), Longfellow (Boston), Fore River (Weymouth) and Burns (Worcester).

Join advocates from around the country for the 2022 Rally for Medical Research! The Hill Day will take place on Wednesday, September 14, with advocates meeting their congressional representatives and staff. The evening before, on September 13, there will be a  reception to celebrate medical research with all partners and participants.

Children’s Cancer Cause is hosting a virtual externally-led Patient-Focused Drug Development (PFDD) meeting on Reducing Cardiac Late Effects in Pediatric Cancer Survivors, on September 15, 2022. The conference is an opportunity for survivors and caregivers to educate representatives of the FDA, academic researchers, and pharmaceutical companies about their personal experiences managing the impact of cardiac late effects on daily living and long-term health.  Registration link.

Save the Date:  Key experts from across the pediatric cancer ecosystem will address the promise and challenges of artificial intelligence implementation in drug development, diagnosis and clinical trial design in the CureSearch Summit Prelude: The Challenges and Promise of Artificial Intelligence in Drug Development on September 15, 2022  3:30PM –5PM (EST).

The co-chairs of the Congressional Childhood Cancer Caucus would like to invite you to the 13th Annual Childhood Cancer Summit to take place on September 22, 2022 in Washington, D.C. All RSVP’s should be directed to Ellie Gable at .

On September 29th from 3:00-5:00 ET, join the NIH Common Fund’s Gabriella Miller Kids First Pediatric Research Program (Kids First) for their fall webinar to hear updates on the program and latest research findings from Kids First investigators.  Registration Link.

 

Take Action:

Submit all September Childhood Cancer Awareness Events for inclusion on the CAC2 Event Calendar/Map.

Building on the #CancelChildhoodCancer campaign from 2021, CAC2 will be sharing childhood cancer facts and information on our social media channels using facts from the Childhood Cancer Fact Library.  You can access graphics here. The bottom left corner of each image has been left open for you to add your organization’s logo. Be sure to use #GoldStrong and #CancelChildhoodCancer when sharing these posts to amplify the messaging.

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.

PBTF’s Survivorship Resource Guidebook has more information and tools to help your family navigate life after treatment ends. Download or request a copy today: http://www.curethekids.org/survivorship-guidebook

For the second year, CureFest will feature a powerful memorial on the National Mall to pay tribute to children who have passed away from cancer.

On Sunday, September 25, organizers will display 1,800 pairs of empty shoes at the base of the Washington Monument across from the National Sylvan Theater. This represents the number of children in the US who pass away from cancer each year.  If you are a bereaved parent and would like to ship a pair of shoes to represent your child, please ship the shoes to the following address by September 12:
CureFest Shoe Memorial
c/o Mike Gillette
10311 Beaumont St.
Fairfax, VA 22030