Families for HoPE

About Families for HoPE

Families for HoPE is a 501(c)(3) organization serving families and individuals affected by Holoprosencephaly (HPE). Although HPE is the most common brain malformation in a developing fetus, statistics tell us that only 3% of all fetuses with HPE survive to birth. With a diagnosis of HPE, very little hope is given by the medical community, and upon receiving a diagnosis of HPE for their child, many parents are told to prepare for imminent death. Families for HoPE strives to give hope to families in all phases of their HPE journey by sharing the knowledge which can only be learned by having or knowing a child with holoprosencephaly The main goal of our organization is to help our families care for their precious children by sharing a sense of hope through a greater understanding of holoprosencephaly, to help these amazing children live up to their individual potential, without pre-supposed limits on ability, disability, quality or length of life. Families for HoPE seeks to provide support for all phases in the HPE journey: Families of unborn infants receiving a diagnosis of HPE Families of children with a diagnosis of HPE Families grieving the death of a child with a diagnosis of HPE Families for HoPE serves families through the following programs: Conducting biennial Family Conferences on Holoprosencephaly Maintaining online support group with 2,200 members Parent-to-Parent support program Support program for bereaved families Distributing educational and reference materials to families about HPE and related issues Programs and opportunities for raising public awareness of HPE

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