Our latest initiative involves introducing a bill in Arizona to provide more comprehensive asplenia education to Arizona medical school curriculum. Stay tuned for updates, and take a look at our past work. From 2019, we’ve participated in legislative advocacy at both the state and federal levels. From attending our very first Everylife Foundation Rare Disease Legislative Advocates (RDLA) meeting in 2019, we’ve actively engaged in advocating for better Newborn Screening and Genetic Testing. We received recognition from US Congresswoman Debbie Lesko (AZ-08) for our efforts. We served on RDLA’s very first Advisory Committee, championing legislation important to rare disease patients and mentoring the next generation of advocates. We also partnered with Arizona Representative Steve Montenegro in 2023 to testify for his bill calling for Medicaid funding for Rapid Whole Genome Sequencing (r-WGS) for critically ill Arizona newborns. The bill, AZ HB2470, passed and was signed into law. This means that when an infant enters a Neonatal Intensive Care Unit (NICU) with a critical illness, but doctors don’t know the reason, they can order r-WGS, discover the cause and most importantly, begin treatment. This early intervention not only saves money, it most importantly saves children’s lives.