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CAC2 Member Blog–Excited to Announce: I’ve Joined the CAC2 Innovation Council!

By CAC2 Member Annette Logan-Parker (Cure 4 The Kids Foundation)  I am thrilled to share that I have joined the CAC2 Innovation Council, a new volunteer opportunity. The Coalition Against Childhood Cancer (CAC2) is a collaborative network of nonprofits, corporations, and individuals from 41 states and nine countries supporting and serving the childhood cancer community. CAC2 members effectively advance various childhood cancer causes by unifying their efforts. As a member of this council, I have the privilege of contributing to a collective effort to evaluate and prioritize opportunities that benefit the CAC2 members. This role involves engaging with a variety […]

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CAC2 Childhood Cancer Community News Digest (January 27-February 2)

Assorted News from the Last Week: A recent study indicates that children and young adults with cancer face an elevated risk of dying if they live in previously redlined neighborhoods—residential areas marked in the 1920s–1930s by lenders as undesirable for mortgage loans due to their racial demographics. International convention: Defeating childhood and adolescent cancer and reducing global disparities. Landscape of global pediatric oncology publications: A cross-sectional analysis. New research explains why immunotherapy is less effective in children with cancer. Epigenetic states during development establish cancer risk before birth. Teens with cancer report worse pain, mental health a year after advance [...] Read more

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

Assorted News from the Last Week: A large number of CAC2 members contributed to the recently published conclusions from the 2024 paediatric strategy forum for medicinal product development in diffuse midline gliomas: to achieve progress: i) drug discovery; ii) new multi-modality, efficient, collaborative, pre-clinical approaches, possibly including artificial intelligence and, iii) efficient clinical trial designs fit for regulatory purposes are required. The FDA approved treosulfan (Grafapex) with fludarabine as a preparative regimen for allogeneic hematopoietic stem cell transplantation in patients ages 1 year and older with acute myeloid leukemia (AML) or myelodysplastic syndrome (MDS). Researchers have determined how children's immune [...] Read more

CAC2 Childhood Cancer Community News Digest (January 13-19)

Assorted News from the Last Week: The U.S. Food and Drug Administration (FDA) approved FoundationOne®CDx as a companion diagnostic for Supporting Organization Member Day One Biopharmaceuticals’ OJEMDA, a type II RAF inhibitor, for the treatment of patients six months of age and older with relapsed or refractory pediatric low-grade glioma (pLGG) harboring a BRAF fusion or rearrangement. Pediatric patients with cancer who have obesity at the time of diagnosis may face an elevated risk of mortality. About 30% of adolescents and young adults with cancer who wanted to die at home did not do so. Cancer burden is shifting from [...] Read more

CAC2 Webinar–“Fit for Filing”

In CAC2's "Fit for Filing" webinar, our speakers explored designing and conducting academic or academic industry collaborative trials that produce data suitable for regulatory filing. This presentation covered best practices and considerations for conducting trials ready to submit for regulatory approval. The panel examined multiple perspectives, including academia, industry, regulatory authorities, funding organizations, and patient advocates. The speakers emphasized the importance of early, robust, and multi-directional partnerships among academic investigators, cooperative groups, regulatory agencies, and industry, and how funding organizations can help promote these collaborations that are crucial to ensure the unmet medical needs of children with cancer remains a [...] Read more

CAC2 Childhood Cancer Community News Digest (January 6-12)

Assorted News from the Last Week: Pope Francis tells pediatric cancer patients they are ‘witnesses of hope.’ Unraveling the relationship between stress exposure and childhood anxiety: Considering accumulation, impact, and type in the first five years of life. New symptom reporting tool improves quality of life for children with cancer. Draft guidance from the FDA and Office for Human Research Protections offers draft guidance for incorporating tissue biopsies into clinical trials. Bone mineral density deficits prevalent among childhood cancer survivors, but modifiable risk factors suggest there are targets for intervention. Childhood cancer genome study reveals hidden variants. Transplant of frozen [...] Read more

SPECIAL YEAR-END ADVOCACY ALERT

There were five pieces of legislation that had gained a lot of support across both the House and the Senate over the past two years thanks to the collective efforts of the childhood cancer community and our legislative champions:   ACCELERATING ACCESS TO CARE ACT: Streamlines out-of-state treatment for children on Medicaid. GABRIELLA MILLER KIDS FIRST RESEARCH ACT 2.0: Extends research funding authorization for another seven years. GIVE KIDS A CHANCE ACT: Supports pediatric studies on new cancer drug combinations. INNOVATIONS IN PEDIATRIC DRUGS ACT: Imposes financial penalties on drug companies that fail to complete required pediatric studies. PRIORITY REVIEW […]

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CAC2 Advocacy Alert: End-of-Year Call to Action

During our October federal advocacy drop-in session, we learned about several pieces of legislation that had a good chance to pass before the end of the year and also alerted everyone that “advocates may be called on to make a final push between now and the end of the year.”  That time has come! During this week of action, we need your help: Accelerating Kids’ Access to Care Act—230 organizations (about a third from CAC2) have signed a letter urging lawmakers to pass the bill in the end-of-year legislative package (here’s a link to that letter). Beginning today, December 9th […]

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Member Blog–When the National Drug Shortage Becomes Personal

By CAC2 Individual Member Jennifer Flowers Rhabdomyosarcoma became a common word in my family when I was three years old. By the time of diagnosis, the cancer had metastasized from the middle ear into the mastoid and eustachian tube. The University of Michigan’s C.S. Mott Children’s Hospital oncology team told my parents there was less than a three percent chance for me to live out the year. There was no definitive treatment protocol to defeat this rare form of cancer, and the survival rate was extremely low. Over the next two and a half years, I underwent surgeries, full head […]

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Guest Blog–Conversations on Cancer – Pediatric Cancers: Navigating the Challenges Together

In conjunction with the European Medicines Agency (EMA), the FDA Oncology Center of Excellence (OCE) held a one-hour Conversations on Cancer public panel discussion on November 19, 2024, to examine an array of challenging decisions faced by members of the pediatric oncology community. The panel discussion featured current CAC2 Board Member Nicole Scobie (Zoe4Life) and past CAC2 Board Member Donna Ludwinski (Solving Kids' Cancer). Because of the rarity of cancers arising in childhood and adolescence and high unmet medical need, pediatric oncology drug development is inherently complex. As a result, pediatric oncology clinician investigators are faced with challenges related to [...] Read more