No, No, Momma – This Is My Story.
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5th Annual
Tee It Up to Fight Asplenia TOPGOLF Tournament
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Sometimes superheroes reside in the hearts of
small children fighting big battles.
Unknown
T.E.A.M. 4 Travis is the only organization in the world dedicated to raising awareness of Isolated Congenital Asplenia (ICA)—a genetic birth defect where a child is born without a spleen or with a non-functioning spleen.
Our mission: To end childhood death from ICA.
We focus on three pillars—raising awareness, legislative advocacy , and funding research to develop a diagnostic test.
Who Was Travis?
Travis was a happy, healthy, deeply loved four-year-old. He rarely got sick and recovered quickly when he did. So how could a simple fever take his life in just 20 hours?
He had Isolated Congenital Asplenia. No one—pediatricians, specialists, or even high-level prenatal imaging—detected that his spleen was missing or non-functional. Today, there is no diagnostic test at birth to screen for this.
Travis’ death was preventable. And that’s what fuels this mission.
3 main pillars of our mission
♥ Awareness
♥ Legislative Advocacy
♥ Funding Research
Awareness
Legislative Advocacy
Funding Research
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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.
Travis’ personality
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His Favorite Things
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Paw Patrol
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Fire trucks
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Horses
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The color orange
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Momma, Daddy and dogs Ike and Abby
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The beach
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His Favorite Activities
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Playing baseball
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Telling stories
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Singing and dancing
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Laughing
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Swimming
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Hanging with his friend
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His Favorite Foods
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Raspberries
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Tomatoes
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Steak
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Pasta
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Pancakes
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Yogurt
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Lamb chops
three mission pillars
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.
