CAC2 Childhood Cancer Community News Digest (July 3-9)
Assorted News from the Last Week:
Sub-Saharan Africa is facing a childhood cancer crisis. Annually, nearly 90% of the more than 100 000 children who develop cancer in sub-Saharan Africa die.
The immunomodulatory agent lenalidomide (Revlimid) appeared clinically active and tolerable in pilocytic astrocytomas and optic pathway gliomas in a cohort of pediatric patients who progressed following initial therapy, according to findings from a phase 2 trial (NCT01553149) published in the Journal of Clinical Oncology.
The NCI MyPART team and their collaborators have published two papers in the journal, Pediatric Blood and Cancer.
- One paper, entitled “NCI intramural program approach to rare tumors: Natural history study of rare solid tumors in children and adults: A longitudinal, comprehensive data and biospecimen collection protocol,” provides a deep dive into the aims of MyPART and the Natural History Study of Solid Tumors protocol. The paper also emphasizes the importance of collaboration across the rare tumor community to make progress.
- The second paper, “The NIH pediatric/young adult chordoma clinic and natural history study: Making advances in a very rare tumor,” highlights recent findings from the MyPART Pediatric Chordoma Clinic, including clinical presentation, pathology, data collected throughout the clinic, and treatment recommendations offered to patients. The paper concludes that the clinic model, which includes a multidisciplinary care team, is an effective way to better understand pediatric chordoma. The paper also outlines the unmet needs of this rare patient population and provides a recent review of the literature on pediatric chordoma.
Giving the drug blinatumomab (Blincyto) after standard chemotherapy substantially increased survival for infants with an aggressive form of acute lymphoblastic leukemia (ALL), a recent study showed. If confirmed in larger studies, the treatment may become standard therapy for infants with ALL caused by KMT2A rearrangements.
Researchers studied how women who were treated for Hodgkin lymphoma during childhood can have a higher chance of abnormal fertility markers in the blood and a lower number of egg cells, compared to women who received no treatment.
Researchers have identified four warning signs that they believe may help identify colorectal cancer early in younger adults. The signs or symptoms are abdominal pain, rectal bleeding, diarrhea, and iron deficiency anemia.
Upcoming Webinars, Online Opportunities, and Meetings:
Rocky Mountain Vintage Racing is pleased to announce a 2-year festival series culminating in 2023 with the FV 60th anniversary on July 28-30. RMVR’s Race Against Kids’ Cancer (RAKC), will be at High Plains Raceway where these wonderful cars of all years and vintages are invited to gather to celebrate this class. Click for more information about Vintage Car Races for Fundraising.
Triage Cancer Webinar: Engaging in Self-Advocacy. Learn practical tips for collecting medical records, talking with health care teams, navigating work and cancer, applying for benefits, filing appeals, identifying inaccurate online information, and more. July 26 1:00 ET. Learn more and register.
Zoefia Alexandria Green Heart Gala, beautiful night of elegance and celebration to raise funds and awareness for Childhood Cancer/ Brain Cancer, September 15 at 7:00 pm ET. Learn more and register.
Join top scientific experts, clinicians, researchers, NCI, childhood cancer foundations and advocates, agency officials, and many more for the Inaugural Childhood Cancer Prevention Symposium. This ground breaking meeting will take place at Children’s National Research & Innovation Campus in Washington, DC on October 25-26th, 2023. (Registration and meeting details forthcoming shortly).
Recordings of Recent Past Events:
CCDI be demonstrated how to use the CCDI Hub and CCDI Childhood Cancer Data Catalog. View the slides from the presentation.
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):
- Ann Samsury (Rally Foundation)
Childhood Cancer International hosted a pair of webinars to celebrate Survivors’ Month. Survivors around the world share the label but not necessarily the experience:
Take Action:
A clinical trial from the Pediatric Early Phase Clinical Trials Network (PEP-CTN), Phase 1/2 Study of Tiragolumab and Atezolizumab in Patients with Relapsed or Refractory SMARCB1 or SMARCA4 Deficient Tumors, is led by MyPART physician Dr. Mary Frances Wedekind and is open for enrollment. This trial will investigate if the immunotherapy drugs tiragolumab and atezolizumab have any effect on tumors that are lacking the genes SMARCB1 or SMARCA4. This trial is also investigating if tiragolumab and tiragolumab with atezolizumab is safe in the pediatric population. SMARCB1 and SMARCA4 deficiency has been found in several rare pediatric and adult tumors. Tumors that are deficient in SMARCB1 or SMARCA4 are often aggressive tumors that are difficult to treat. This trial is open to patients 12 months and older, through adulthood. Participants can enroll at the NIH Clinical Center, or at PEP-CTN core sites and non-core sites throughout the US. The trial is also open for enrollment in Quebec, Canada and Queensland, Australia. Learn more about this clinical trial here.
Fennec Pharmaceuticals announced its HELPS™Advocacy Grant Program, available to nonprofits with a focus on childhood cancer and the lifelong impact of treatment. The Fennec HELPS grant supports 501(c)3s who educate about childhood cancer. Awards will range from $1,000 to $100. For information on the FENNEC HELPS™ Advocacy Program – and to apply – visit: https://form.jotform.com/231426741678058. The application deadline is July 31st. Funds must be used by Dec 31st, 2023.
Pediatric Cancer legislation needs your support. Learn more about how to support the Gabriella Miller Kids First Research Act 2.0, the Sawyer Finn ACT, Comprehensive Cancer Survivor Act, Accelerating Kids’ Access to Care Act,and the Give Kids a Chance Act.
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