My Nonprofit Reviews

This a fairly new and exciting non-profit organization. Aimed at increasing education and awareness about Chiari Malformation, a frequently occurring (at least 1/1000, some estimates are 1/100), but often misunderstood and too often fatal condition which has many life-threatening complications. Chiari Malformation is a disorder where the lower portion of the cerebellum is often compressed and is forced down through the foramen magnum (the bottom opening of the skull where the spinal cord exits).

The focus of the group is to get legislation passed that will facilitate education of the medical community, government agencies, and the public about appropriate diagnosis, treatment, and functional implications of this condition. Unfortunately, many physicians know little about or use outdated information regarding Chiari Malformation, resulting in increased suffering, disability and even death. Although there is no cure for this condition, proper treatment by a neurosurgeons and other physicians can often prevent needless deaths and minimize disabling complications.

Ehrick Garion's Act is staffed entirely by volunteers, so all funds raised go straight to the goal of getting this law passed. Officers and volunteers are all well-acquainted with Chiari Malformation, contributing a variety of expertise related to Chiari Malformation. Many have this condition. The steps to accomplish this mission are difficult, and will take time, but there is a clear set of goals designed to get the job done. Beginning with the use of social media, and expanding into an on-the-road campaign to visit with legislators, medical professionals and hospitals, medical schools, public schools and meeting with and personal advocacy along the way for those with Chiari will be a powerful tool in the plans to make this act a reality, as well as being valuable accomplishments in and of themselves.

In my mind what makes Ehrick Garion's Act deserving of recognition is that it has a clearly defined mission, all funds go toward meeting these specific goals, and the level of expertise and caring embodied by the leadership and volunteers. It addresses a little known but fairly common condition which has been underestimated on many levels. The end goals of this organization will not only improve but even save lives of countless individuals who otherwise might flounder in a medical system that is in need of education and tools to improve diagnosis and treatment.