But, the bumblebee does not know that so it goes on flying anyway."
~Mary Kay Ash
For a printable brochure about Global Hydranencephaly Foundation
We are a nonprofit organization incorporated on June 14, 2011 and registered with the Commonwealth of Virginia State Corporation Commission, as well as a foreign entity with the State of Washington. The name Global Hydranencephaly Foundation was adopted as our “fictitious business name” under our parent company: Brayden Alexander Global Foundation for Hydranencephaly, Incorporated for ease of business use purposes. Ultimately, we are a network for ensuring quality of life for the families touched by this rare neurological condition; a parent-run foundation, organized and managed by the following volunteer individuals:
Hydranencephaly is a rare neurological condition, knowingly occurring in less than 1 in 10,000 births across the globe with statistics portraying only 1 in 250,000 in the US alone (as of the last statistical predictions made). The condition presents as the absence of the brain's cerebral hemispheres with the existence of excess cerebrospinal fluid in their place. There is no known cause, no cure, and very little optimism available for those diagnosed by medical professionals, so little that doctors most often recommend termination when diagnosed in utero. In the event that diagnosis comes at or after birth, still little to no hope is given for a quality of life worth living.
On July 1, 2008, the morning after Brayden Alexander was born at the University of Missouri: Columbia; he was given this grim diagnosis, a prognosis that stripped all hope for his existence, one that gave him an expiration date of no longer than a year and closer to weeks. By networking with other families with children living quality lives with this condition, his family became believers in the possibilities rather than the medically subjected impossibilities thus bringing this foundation in to existence.
Global Hydranencephaly Foundation’s mission and vision statements serve as the inspirational language guiding the efforts of the organization. Together these statements work to establish organizational behavior plans, guide the decision-making process, and determine the standards for those who represent our name and work effortlessly to build our reputation. MISSION: The Global Hydranencephaly Foundation is a family driven nonprofit organization dedicated to providing families faced with a diagnosis of hydranencephaly, the opportunity to help their child live the quality of life he or she deserves. The family-to-family resource network is the foundation of this mission; an ideally structured, multi-faceted community for the dissemination of invaluable information, sharing of effective care management strategies specific to the unique circumstances a family faced with diagnosis of this rare neurological condition may encounter, and individualized, life-long support. Emphasis is placed on the development of empowered parent advocates, strengthened by availability of comprehensive information, geographically tailored resources, and a confident awareness of the rights children have to quality, compassionate care without discrimination. We embrace the opportunity for continuous growth through the expansion of additional collaborative partnerships with like-minded organizations and reputable community businesses. Through community-based awareness campaigns and the planned infiltration of the medical community, we aim to conquer the misconceptions that exist surrounding this diagnosis and portray a clearer picture of the possibilities that exist for these children; giving multiple reasons to… “Believe in the Impossible!”
In effort to carry out this mission, GHF will: