CAC2 Childhood Cancer Community News Digest (March 27-April 2)

April 3, 2023 Community News, News Digest

Assorted News from the Last Week:

Melissa Jackson joins the Coalition Against Childhood Cancer as its new Executive Director.

NCI Director Monica Bertagnolli announced the rollout of the National Cancer Plan which provides a comprehensive framework for this meaningful collaboration and unites us in acting on the vision President Biden and First Lady Biden set out in the Cancer Moonshot℠..

The Coalition Against Childhood Cancer will hold its 2023 Annual Summit.  Hosted by Children’s Healthcare of Atlanta and presented by Day One Biopharmaceuticals, this annual event reflects the CAC2 values and mission by providing top-notch educational programming, designing multiple opportunities for members to connect and engage, and showcasing the ongoing efforts of our members who are working for a future without childhood cancers.  Please register.

Research has revealed a type of RNA, previously considered to be ‘junk,’ that may help doctors distinguish and treat a subgroup of patients, including children, with medulloblastoma.

The National Institutes of Health posted data that shows an improvement in the reporting of results from clinical trials sponsored by the agency (gated).

While staying at Rome’s Gemelli Hospital where he is undergoing treatment for bronchitis, Pope Francis paid a visit Friday to the pediatric oncology ward and baptized a newborn patient.

Fennec Pharmaceuticals Inc. announced that the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) has issued a positive opinion and recommended granting a Marketing Authorization for Pedmarqsi™

A framework for medical decision making when a cure is not possible

The FDA has granted full approval to pembrolizumab (Keytruda) for the treatment of adult and pediatric patients with unresectable or metastatic microsatellite instability–high (MSI-H) or mismatch repair–deficient (dMMR) solid tumors.

The FDA has issued draft guidance to improve applications for accelerated approvals.

Upcoming Webinars, Online Opportunities, and Meetings:

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.

The Courageous Parent Network presents a webinar entitled Understanding and Addressing Pediatric Medical Trauma on April 12, at 8:00 pm ET,  Click here for more information.

Registration has opened for the CAC2 2023 Annual Summit, presented by Day One Biopharmaceuticals! This year’s conference takes place from noon, Monday, June 19 through 2:00 pm, Wednesday, June 21, 2023, in Atlanta, GA, at Children’s Healthcare of Atlanta Emory University.  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 2023 Evan Lindberg & Erik Ludwinski College Scholarship Program is now accepting applications!  The program is open to high school seniors who are survivors of high-risk cancers or currently in treatment.  Students must be enrolled in a 4-year undergraduate institution and demonstrate a need for financial assistance. Three (3) $10,000 scholarships will be awarded. Applications are accepted from March 15 to May 1, with winners announced July 1.  Each winner will receive $2,500 in scholarship support their freshman year.  Funding will be renewed annually (for a total of $10,000 over 4 years), if eligibility requirements are maintained.  Please apply here: 2023 Childhood Cancer Survivor Scholarships — The EVAN Foundation.  Contact for more information:  info@theevanfoundation.org.

 

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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