Our Mission: Our Vision:
Mission (adopted 8/21/13): 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!”
Though a budding foundation, the efforts have the potential to change the lives of thousands of families across the globe; many already involved with the cause. Grants will be awarded for assistance with therapeutic services, equipment, medical costs, and other financial responsibilities of caring for these children. Information for adoption and designated care to insure families are not overwhelmed by the amount of involvement required in caring for these children will also be shared. Awareness campaigns and merchandise to create recognition of the cause and what this condition is will be made available. The foundation will be guided by individual family needs as it grows. The ultimate goal is not to cure, simply to insure these little lives are allowed to shine.
Our Mission: Our Vision:
All Families connected with us are asked to:
Fill and submit the ONLINE VERSION of our official survey.
Or print out the version LOCATED HERE
and return to Alicia Harper via email President@hydranencephalyfoundation.org
or via snail mail - Global Hydranencephaly Foundation
PO Box 1150
Seabeck, WA 98380-9800