Westyns Light
we are a nonprofit with emphasis on bringing awareness for CAH Congenital Adrenal Hyperplasia .... Westyn King Engel was born June 1, 2015, after a routine newborn screening he was diagnosed with a RARE genetic disease called CAH or Congenital Adrenal Hyperplasia due to 21-hydroxylase deficiency OR Classical CAH Salt Wasting. This is an adrenal deficiency of cortisol as well as a sodium component making it not only extremely rare, but life threatening. It falls into an endocrine disease and there is no known cure. There is so little information on this disease for communities, families, and patients as well as emergency medical responders. WESTYNβS LIGHT was created to keep his light shining through rare disease education for communities, emergency medical responders, CAH awareness, medical device developement, and research for a cure.
Westyn's Light
Westyn's Light is a U.S. nonprofit organization dedicated to increasing awareness about Congenital Adrenal Hyperplasia (CAH) and other rare diseases. The organization's mission is centered on education, particularly for communities and emergency medical responders, to improve understanding and support for individuals affected by CAH.
Origins and Mission
Westyn's Light was established to honor the legacy of its namesake, Westyn, and continues his impact through community engagement and educational initiatives. The organization aims to provide resources and support to families dealing with rare diseases like CAH.
Activities
- Education and Awareness: Westyn's Light focuses on educating communities and emergency responders about CAH, ensuring better preparedness and understanding in medical emergencies.
- Support for Medical Devices: The organization helps provide necessary medical devices to individuals requiring them, as evident in their support for Maddox from Georgia.
- Community Involvement: They engage with local schools and communities to foster support and raise funds for their causes.
Financial Overview
Financially, Westyn's Light has shown a small but growing presence, with reported revenues slightly above expenses. The organization maintains a prudent asset management structure with minimal liabilities.
Affiliations
Westyn's Light is noted to have connections with local organizations and communities, including partnerships with educational institutions and service dog organizations like Tails for Life. The Engel family, involved with Westyn's Light, is also active in their church community at Christian Life Church in Mequon.
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