T.E.A.M. 4 Travis

A nonprofit organization

T.E.A.M. 4 Travis (Together Ending Asplenia Mortality) mission is to prevent childhood death from the rare genetic birth defect Isolated Congenital Asplenia. We advocate and fundraise to support community education and awareness, expanded research and more extensive prenatal testing and newborn screening.

T.E.A.M 4 Travis (Together Ending Asplenia Mortality) is a 501(c)3 organization created from every parent's worst nightmare, the sudden and unexpected death of their perfectly healthy, vibrant and active child. In August 2018, four-year old Travis Joseph Bones passed away within 20 hours of first developing flu-like symptoms, despite receiving medical attention. Travis did not die from the flu, but rather from a rare, previously undiagnosed birth defect called Isolated Congenital Asplenia (ICA). He was born without a spleen, which left his body unable to fight dangerous bacterial infections.

T.E.A.M. 4 Travis is active in the Rare Disease Community, serving on Global Genes Foundation Alliance and Everylife Foundation's Newborn Screening Working Group. We work to raise community awareness and improved medical education about ICA. Fundraising efforts support advocacy and education efforts. During our first year, we met with members of Congress to provide education about ICA, asking for their support of rare disease initiatives such as the Newborn Screening Saves Lives Act and the creation of an FDA Rare Disease Center of Excellence. We partnered with the researchers who discovered the genetic mutation for ICA. One of our goals is to contribute fundraising efforts to advancing their research and ultimately helping develop diagnostic tests, treatment plans, provider and parent education and awareness.

ICA is one of 7,000 rare diseases impacting 30 million Americans. 50 percent of rare disease patients are children, and of those children, 3 in 10 won't live to see their 5th birthday (like Travis). This is the reason we advocate to expand existing Newborn Screening and provide support to rare disease awareness, education and research.

Organization Data

Summary

Organization name

T.E.A.M. 4 Travis

Tax id (EIN)

83-3419579

Guidestar

Address

PO Box 361
Litchfield Park, AZ 85340

Phone

623-693-3317

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