Home Ver1 | TEAM 4 Travis

A legacy of love, laughter and unbridled joy

Travis' Story

Told by his mother, Allison

Our mission is to raise awareness about Isolated Congenital Asplenia through education, research and a strong community. But we can’t do it alone.

We need your support to help fund more research and education.

Awareness

So many people have never heard of Isolated Congenital Asplenia (ICA). TEAM 4 Travis educates key stakeholders, community leaders, first responders and parents about this deadly disease. We do this by speaking at medical conferences, such as Sanford Health’s Great Plains Rare Disease Summit in 2023 and the Society of Developmental Biology’s Annual Meeting in 2024. We’ve also been honored to partner with the Pharm.peDs club at Midwestern University each year, speaking at their Rare Disease Day events attended by Pharmacology PhD candidates, faculty and staff. Having the historic Gilbert, Arizona Water Tower lit up in orange each August and working with first responders are additional ways we encourage people to learn more about ICA and join our mission.

Legislative Advocacy

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.

Funding Research

We partnered with Uplifting Athletes for the 2022 Young Investigator Draft to co-fund the work of Maurizio Risolino, PhD in the Selleri Lab at University of California , San Francisco. Dr. Risolino and his mentor, Licia Selleri, MD, PhD, study spleen development in mice. Our funds helped them create a new mouse line so they can continue looking for genetic causes for ICA, and how those mutations affect humans. We’ve also funded Whole Genome Sequencing for 15 ICA patients in the Casanova Lab at Rockefeller University in New York. We continue raising funds to support both of these ongoing projects, as well as seeking to nominate another young researcher for the 2026 Young Investigator Grant.