Global Hydranencephaly Foundation

Patient Leader


Health Activist Hero Best in Show: Community or Forum Patient Leader Hero Best in Show: Facebook Advocating for Another Best Team Performance Best in Show: Community


Best in Show: Community or Forum

GHF is a 100% volunteer-driven nonprofit organization with a common belief that the efforts made in fundraising should be used to support the mission of providing support to families across the globe. From the board of directors to the individuals who give of their time and/or talent for short-term projects; all has been given from the heart.  — Ali

This family support group is the foundation for this organization's mission. Exclusive to primary care providers of children who been diagnosed with hydranencephaly, the group is far more than simply a support group - it has grown above and beyond, into a family that loves one another through the good and bad that comes along the way.  — Ali

She does so much to make our children's condition known. Best Advocate I know!  — Jolene

Ali has created a wonderful place for families who have previously felt alone and lost to find support to help create better lives for children and families with hydranencephaly.  — Barbara

She helps so many families who have a very grim diagnosis for their children. And with finding out something so heartbreaking she is always such a wealth of knowledge and hope. She even helps those whose children are just medically fragile and need someone to talk to.  — Vanessa

Global Hydranencephaly Foundation

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