Childhood Cancer News & Views: April 2024

25 Years of Children's Cancer Cause

This month marks a significant milestone for Children's Cancer Cause as we recognize 25 years of creating a brighter future for children with cancer, survivors, and their families. In April of 1999, the childhood cancer community lacked a voice in national debates on cancer policy, and we are now strong and action-ready. The impact of our collective efforts is evident in increased federal research dollars, the passage of crucial legislation, and the rising number of children surviving cancer.

While we celebrate the progress of the last quarter century, we recognize that there is still much work to be done. You are a key part of moving forward in this fight, and you can continue to support our mission in several ways:

• Make a 25th Anniversary gift?to help fuel our progress towards a brighter future.
• Join our inaugural Silver Society?and be recognized for your commitment to our cause.
• Nominate an outstanding childhood cancer advocate?who deserves recognition for their contributions.

Take Action:?Innovation in Pediatric Drugs Act of 2023

Thank you to the hundreds of grassroots advocates who have joined us this month in reaching out to Congressional Representatives about H.R. 6664 - the Innovation in Pediatric Drugs Act of 2023. This is a critical moment because the House of Representatives might act on a comprehensive rare disease proposal soon, and we want this bill included in that package.

This legislation would ensure that drugs for rare diseases are studied in children and that drug companies are held accountable for completing pediatric study requirements. On our blog, you can find a map of the Congressional districts that have been contacted through our action center about H.R. 6664. If your district isn’t on this map, then we really need your help to make sure your Member of Congress hears about this legislation from a constituent.

Take action here.

2024 Champion's Prize: Now Accepting Applications

The importance of post-treatment survivorship care is essential to the lifelong health of childhood cancer survivors. To recognize excellence in survivorship care, Children’s Cancer Cause is now accepting applications for the 2024 Survivorship Champion’s Prize.

This $10,000 annual award is presented to a group, program, or institution making significant advances in programs and services to provide life-long health maintenance for survivors of pediatric cancers. If you know of a worthy organization, group, or clinic that should be recognized for its childhood cancer survivorship work, please be sure they know about this opportunity. The application deadline is July 31st.

Established in 2020, the Survivorship Champion’s Prize has awarded a total of $85,000 in funds to thirteen prestigious survivorship programs, and Children’s Cancer Cause has been working with these previous recipients in sharing information to identify common clinical issues that can best be addressed through collaboration. The 2024 Prize recipient will have the opportunity to become a part of this collective effort.

Learn more about the Prize and eligibility requirements.

Our 2023 Annual Report

In case you missed it, we want to be sure you've seen our 2023 Annual Report, which outlines the work we were able to accomplish last year thanks to your support.

At Children’s Cancer Cause, our policy work focuses on two main pillars: drug development and survivorship. We were successful in achieving the introduction of legislation on both fronts in 2023, which you’ll read more about in this report.

Find the report on our site.

Quick Links? I? Recommended Reading

• FDA grants accelerated approval to tovorafenib: The FDA granted accelerated approval to tovorafenib (Ojemda, Day One Biopharmaceuticals, Inc.) for patients 6 months of age and older with relapsed or refractory pediatric low-grade glioma (LGG) harboring a BRAF fusion or rearrangement, or BRAF V600 mutation. This represents the first FDA approval of a systemic therapy for the treatment of patients with pediatric LGG with BRAF rearrangements, including fusions.(Food and Drug Administration, 4.23.24)
• New study sheds light on the mechanisms underlying the development of malignant pediatric brain tumors: A new study revealed how aberrant epigenetic regulation contributes to the development of atypical teratoid/rhabdoid (AT/RT) tumors, which are aggressive brain tumors that mainly affect young children. (ScienceDaily, 4.15.24)
• Burden of Childhood Cancer and the Social and Economic Challenges in Adulthood: This systematic review and meta-analysis, which examined 280 articles representing 389?502 individuals who survived childhood cancer, revealed that these survivors face considerable socioeconomic difficulties in the long term. Specifically, they experience notable challenges in areas such as education, employment, and establishing families when compared with their unaffected peers. (JAMA Pediatrics, 4.15.24)
• "A whole new perspective on life" from an AYA survivor: Medulloblastoma survivor Victoria wrote on our blog about the impact of being diagnosed with a brain tumor that had also spread into her spine as a young adult. “It’s a life-long diagnosis with constant upkeep and sometimes endless mountains to climb,” she said.?(Children's Cancer Cause blog, 4.3.24)
• For childhood cancer survivors, inherited genetic factors influence risk of cancers later in life: “Knowledge about a person’s genetic makeup could potentially be useful in managing their risk of subsequent cancers,” said lead investigator Todd M. Gibson, Ph.D., of NCI’s Division of Cancer Epidemiology and Genetics. “The hope would be that, in the future, we can incorporate genetics along with treatment exposures and other risk factors to provide a more complete picture of a survivor’s risk of subsequent cancers to help guide their long-term follow-up care.” (NCI, 3.7.24)

The Tax Benefits of Donating Cryptocurrency

Did you know that you can donate Bitcoin (BTC), Ethereum (ETH), Shiba Inu (SHIB), and other cryptocurrencies to Children's Cancer Cause?

When donating crypto, you receive a tax deduction for its fair market value, and you avoid the capital gains tax you would have incurred if you had sold the crypto first and then made a donation. That means you’re able to donate more, as well as deduct more on your tax return. The difference? Sometimes more than 30%.

Learn more about donating crypto.