By CAC2 Student Member Joshua Omale In the heart of advocacy, the rhythm of change reverberates most profoundly at the grassroots level. For me, this journey isn’t just about raising awareness; it’s about igniting hope, one person and one community at a time. As a passionate advocate for childhood cancer awareness, my path has been shaped by stories I have heard that reflect resilience, bonds of solidarity, and a relentless pursuit of a brighter tomorrow. In this deeply personal reflection, I invite you to explore the transformative power of community-driven initiatives in the fight against childhood cancer with me. Grassroots […]
Read moreBy CAC2 Member Steven Giallourakis (The Steven G. Cancer Foundation) When someone has succeeded in life, we tend to think of them as successful. That they have earned the life they have. This might be partially true, hard work does pay off. Yet when we look at someone’s success we tend to gloss over all the luck. If we are talking about business success and the accumulation of wealth, being born in the United States of America is the best roll of the dice you can have. Being born to parents who love you, who support you and can help […]
Read moreBy CAC2 Member Matt Marks (Leukemia & Lymphoma Society) State borders shouldn’t be barriers to treatment for children with cancer or other complex illnesses. Yet all too often, they cause challenges—or even treatment delays—for children and their families who rely on Medicaid or CHIP for their health insurance. That’s why I encourage our community to champion the bipartisan Accelerating Kids’ Access to Care Act (AKACA). This bill would reduce the paperwork required of doctors treating children from out-of-state, so that children can receive the care they need faster and with fewer delays. Recently, the U.S. House of Representatives’ Energy and Commerce […]
Read moreBy CAC2 Member Matt Meo (Hello Cure) Our family is yet another childhood cancer family. Our son, Landon Meo, was diagnosed with medulloblastoma on March 25th, 2021 and passed away on December 17, 2022 at the age of 10 and 1/2. Landon always said his wish is that “no kid EVER” have cancer. Like many parents, we found ourselves asking, “What can we do to help?” We frequently saw parents share their child’s story on Facebook and Instagram pages. Many had thousands of followers. Even the ones with smaller followings had a circle of people who genuinely cared about them. […]
Read moreThe Energy and Commerce Committee advanced proposals earlier this month that will extend Americans’ access to telehealth services, strengthen and preserve Medicaid, and encourage innovation to help children with rare diseases. In a Subcommittee markup, the Health Subcommittee forwarded 21 pieces of legislation to the Full Committee for consideration. Several of them are important to the childhood cancer community: Creating Hope Reauthorization Act (HR 7384). Pharmaceutical companies developing treatments for rare diseases that mainly affect children are eligible for rare pediatric disease priority review vouchers supporting their work. Children represent about half of all people living with a rare condition. […]
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