Patient Organization -
T.E.A.M. 4 Travis
T.E.A.M 4 Travis
Together Ending Asplenia Mortality
At T.E.A.M. 4 Travis, their mission is to end childhood death from the rare disease Isolated Congenital Asplenia. Named in memory of the vibrant and seemingly healthy 4-year-old Travis Bones who died of undiagnosed ICA within hours of first developing a fever, T.E.A.M. 4 Travis raises awareness and provides education about ICA, while working to fund ongoing research into the genetic causes for ICA and potential diagnostics.
T.E.A.M. 4 Travis’ founder (and Travis’ mom) Allison partnered with KAL Research Initiatives for help with scientific writing to produce marketing material for an upcoming professional medical conference. As KAL founder Helen Hernandez and Allison worked on the technical aspects of creating a one-pager, they also strategized to bring more researchers and medical professionals together to discuss the genetic causes for ICA, the current state of genetic testing and the future for finding a prenatal or newborn screening to detect the spleen.
KAL Research Initiatives
At KAL Research initiatives we aim to support the unique missions of each organization as if their exact missions were our own. I really enjoyed working with Allison over a 3-4 month period. We held meetings every 2-3 weeks where we discussed the insights Allison had from her team of experts and that I had obtained primarily through my exploration of the scientific literature. Simultaneously, I was looking, listening, and watching, for companies and pieces of technology that could suit the unique needs of T.E.A.M 4 Travis and was able to share these leads.
Isolated Congenital Asplenia is quite unique in the rare disease space in that these individuals act and appear incredibly healthy right up until they are not and, even though asplenia is something people can live healthy lives with, often by the time it is caught in these children, it is too late and they succumb to the disease. The importance of this mission cannot be overstated and I look forward to watching this whole field develop even further than it has already under Allison’s direction and Travis’s precious gaze.