Name of Website
Global Hydranencephaly Foundation
Address of Website
http://www.hydranencephalyfoundation.org
http://www.hydranencephalyfoundation.info
Local, National, or International?
International
Organization or Personal? Nonprofit or Profit?
Recognized by the State Corporation Commission of the Commonwealth of Virginia as a Nonprofit Corporation on June 14, 2011 and authorized to transact business subject to all Virginia laws applicable to the corporation and its business. We are awaiting 501c3 status.
Mission Statement
Through the Global Hydranencephaly Foundation, a greater passion will be shared as families are networked across the globe to ensure every child given this diagnosis has the opportunity to live and thrive in the quality of life they deserve. Families will be offered support, information, guidance, and resources. Through education and awareness campaigns, the medical community will become enlightened to the possibilities that exist for these children and the world will learn to accept this condition as simply an obstacle in the lives of these little miracles.
Resources Available
Global Hydranencephaly Foundation Family-to-Family Resource Network on Facebook: (http://www.facebook.com/hydran.families): offering support, network opportunities, and information 24-hours a day from parents who are on the same journey.
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
Advice
- Start by learning about hydranencephaly at our information site (www.hydranencephalyfoundation.info)
- upon confirmed diagnosis, network with other families through Facebook
- awareness is essential: even if your life has not been personally touched by this diagnosis, educate yourself and share with others. This small feat could save the life of a child.
