Spread the Travis Love! Your monthly gift will help us continue promoting Asplenia advocacy and awareness!

Your donation will help us continue to strengthen our efforts to advocate for more comprehensive Newborn Screening.

Spread Travis Love and awareness! Will you help us spread the word about the silent killer Asplenia?

Your generous gift will allow us to quickly reach our goals for 2020, which include funding the match to the Uplifting Athletes Young Investigator Draft, which will be used for furthering Asplenia Research.

Fundraisers

Reaching our goal of $1,000 will help us gain momentum in our advocacy and community education awareness efforts.

Reaching our goal of $5,000 by February 28 gets us halfway to the ultimate goal of being eligible to apply for the Uplifting Athletes Young Investigator Draft.

We've been offered a $10,000 matching grant from Uplifting Athletes. Reaching our goal of $10,000 will allow us to be eligible to apply for this amazing grant opportunity to contribute a total of $20,000 to asplenia research.

TEAM 4 Travis 

Four-year old Travis possessed a megawatt smile, a love for life and a wide circle of friends. He played Tee ball, attended classes at The Little Gym and Music Together, adored Paw Patrol, fire trucks, horses and dogs. He was passionate about his favorite foods: steak (medium-rare), tomatoes, berries, pasta and yogurt. Travis also held firm opinions about clothes, shoes and sports teams. He was seemingly perfectly healthy, active, adventurous, intelligent and vibrant. That’s why it was such a brutal shock when Travis died in August 2018, suddenly and unexpectedly, hours after first developing a fever and despite receiving medical attention. 

TEAM 4 Travis was born from Travis’s mother Allison’s desire to do something to prevent other families from experiencing such tragedy. In addition to providing endless support, friends also planted the seeds that grew into TEAM 4 Travis.

One friend urged that there must be a reason Allison remained standing through so much tragedy, that she had to do something to prevent ICA from devastating other families. Another friend researched asplenia, finding the same doctors’ names in various articles linked to the discovery of the genetic mutation for ICA. Allison contacted Dr. Licia Selleri, who introduced her to her colleague, Dr. Jean-Laurent Casanova. From this, TEAM 4 Travis (Together Ending Asplenia Mortality) was created. 

During the early months, we created a Scientific Advisory Board consisting of global Asplenia experts and raised awareness about this rare disease. We became active in the Rare Disease Community, attending events like Rare Disease Day at the National Institutes of Health, the Everylife Foundation’s Rare on the Road Leadership Tour and Global Genes Rare Patient Advocacy Summit. We advocated to Arizona members of the US House of Representatives and US Senate on behalf of rare disease patients, asking for support of initiatives including the Newborn Screening Saves Lives Reauthorization Act. 

As the only organization in the world dedicated to preventing childhood death from Isolated Congenital Asplenia, we built TEAM 4 Travis from the ground level. Initial fundraising efforts supported our infrastructure and network, as well as advocacy and awareness efforts. 
 As we move into our second year, we focus on our big dream of being able to fund the creation of a global research network dedicated to further medical research about the disease, to gain a deeper understanding of what causes ICA. This lofty goal will require a real push from our TEAM, to be ready to make a significant contribution to our research partners. 

The things we do know about ICA is that it’s a primary immunodeficiency and it is the only known birth defect that involves a lymphoid organ without additional developmental abnormalities. We also know ICA knows no geographic or ethnic boundaries, as it affects people from communities throughout the world. Although classified as a rare disease impacting approximately 1 in 600,000 births, our panel of experts contend it is severely underdiagnosed, as an autopsy may not be performed on every child who dies from apparent flu-like symptoms.


So much is still unknown about ICA. Our Scientific Advisory Board tells us research is needed to unravel the molecular diagnosis of 50% of ICA patients who do not carry a mutation for ICA. Research is also needed to unravel the molecular and cellular mechanisms leading to asplenia and to study potential curative approaches, including treatment protocols.  