Causes: Brain Disorders, Health, Neurology & Neuroscience, Philanthropy
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!”
Results: GHF is a registered 501(c)(3) nonprofit organization incorporated in the Commonwealth of Virginia on June 14,2011.We began doing business as Global Hydranencephaly Foundation in December 2011 under the parent corporation of Brayden Alexander Global Foundation for Hydranencephaly; registered as a foreign entity to do business in Washington state in October 2012; sponsored the first EVER global hydranencephaly conference in Dallas, TX the weekend of June 14-16; working to build our network of families and have reached families in the US, Mexico, Canada, Brazil, Africa, Greece, Philippines, Belize, Australia, Ireland, United Kingdom, Portugal, and more. Recognizing our SECOND Hydranencephaly Awareness Month this June 2014 with several events, including our first Global-Wide Walk/Run for hydranencephaly awareness.
Target demographics: families of children with a diagnosis of hydranencephaly, or those undiagnosed but possessing of similar traits/characteristics, across the globe
Direct beneficiaries per year: network over 600 families across the globe and provided several new families with some light during the darkness of diagnosis. Individualized support is our specialty; and in providing this, we are learning in what areas our efforts can be of best benefit.
Geographic areas served: globally
Programs: Family-to-Family Resource Network; equipment lending/exchange closet "The Hive", patient advocacy for families navigating the medical system, support, information, and a long list of individualized resources making it possible for families to provide their child with the best quality of life possible!
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!”
Results: GHF is a registered 501(c)(3) nonprofit organization incorporated in the Commonwealth of Virginia on June 14,2011.We began doing business as Global Hydranencephaly Foundation in December 2011 under the parent corporation of Brayden Alexander Global Foundation for Hydranencephaly; registered as a foreign entity to do business in Washington state in October 2012; sponsored the first EVER global hydranencephaly conference in Dallas, TX the weekend of June 14-16; working to build our network of families and have reached families in the US, Mexico, Canada, Brazil, Africa, Greece, Philippines, Belize, Australia, Ireland, United Kingdom, Portugal, and more. Recognizing our SECOND Hydranencephaly Awareness Month this June 2014 with several events, including our first Global-Wide Walk/Run for hydranencephaly awareness.
Target demographics: families of children with a diagnosis of hydranencephaly, or those undiagnosed but possessing of similar traits/characteristics, across the globe
Direct beneficiaries per year: network over 600 families across the globe and provided several new families with some light during the darkness of diagnosis. Individualized support is our specialty; and in providing this, we are learning in what areas our efforts can be of best benefit.
Geographic areas served: globally
Programs: Family-to-Family Resource Network; equipment lending/exchange closet "The Hive", patient advocacy for families navigating the medical system, support, information, and a long list of individualized resources making it possible for families to provide their child with the best quality of life possible!
Health
Los Alamos
