TEAM KRABBE STRONG
Team Krabbe Strong is an advocacy/support group with members spanning the globe who work together to raise awareness about Krabbe Leukodystrophy and other Leukodystrophies. The group also lobbies for the implementation of improved newborn screening requirements that makes it mandatory to test for Krabbe Leukodystrophy at birth, allowing for potential life-saving treatment (and improving current treatment options).
Team Krabbe Strong also grants (bucket list) wishes for families affected by leukodystrophy and other life-threatening illnesses. The major organizations who grant similar wishes require that a child be of a certain age in order to qualify for a wish. This rule eliminates many affected by Krabbe, with a life expectancy of two years (based on onset of disease). Our organization works with professional and collegiate sports teams, individual athletes, celebrities and more to help create memorable experiences for the affected child and the entire family. We work to help the families "Escape The Diagnosis" and make lasting memories.
The organization is run by one individual, is not currently a 503(c) non-profit, and relies on the generosity of the aforementioned organizations and individuals to create these experiences. However, not every organization will be so willing to help, and costs will occur.
Raffle River has helped TEAM KRABBE STRONG
host 1 raffle.
JOHN NEAL, Main Contact
Join The Team