Imagine that your child has been diagnosed with brain cancer. Imagine the best treatment option for them is a new clinical trial that comes along with thick packets of consent forms and specific instructions for when and how to give medications at home, keeping a patient diary throughout the course of treatment to help researchers understand the effects of the treatment. Now imagine all of this information is in another language, on top of the burden of wanting to give your child the best chance of survival after a brain cancer diagnosis. It’s truly unbearable. The work of Dr. Cassie Kline of the Children’s Hospital of Philadelphia and the Diversity, Equity, & Inclusion committee out of the Children’s Brain Tumor Network is working to make it possible for these forms to be available in other languages, increasing potential clinical trial access for families by removing language barriers to understanding the options available to their child. The Lilabean Foundation is proud to support this work to help patients and their families battling a brain cancer diagnosis.
Since 2020, LBF Board Member Jessica Colburn has had the opportunity to sit on the Diversity, Equity, & Inclusion Working Group Dr. Kline leads. On this committee, Jessica learned from Dr. Kline and other researchers about their desire to increase equitable access to clinical trials by having essential clinical trial forms available in languages other than English. Additionally, Jessica’s daughter Maddie, an LBF Hero, hoped to use the funds raised from her LBF Hero page to support work focused on equity and inclusion for other kids with brain cancer. In 2022, the Lilabean Foundation, in collaboration with Jessica and her daughter Maddie, an LBF Hero, decided to focus the fundraising from Maddie’s Hero page on efforts to support language translation of the Consent Forms for the Children’s Brain Cancer Institutes from English into Spanish. The funding also helped with the translation of PNOC 022 Diaries and Patient-reported outcome measures, which are so crucial for symptom tracking, clinical trial instructions, etc. It is also where families record side effects etc, which helps researchers understand the efficacy of the treatment plan and also helps parents feel confident that they are giving medications correctly to their child.
The Lilabean Foundation is honored to continue to fund this work to improve access and equity for kids battling brain cancer and is committed to ongoing funding for the translation of patient consent forms and diaries. Last year, LBF was honored to join forces with LBF Hero Maddie and her family to raise money through Maddie’s Hero page, and this year, we are thrilled to continue this collaboration. You can help these efforts by making a donation HERE.
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