Category: Holoprosencephaly Awareness Week 2014


Faces of HoPE

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Meet Abigail

(Written by Michelle Alexander) 13 years ago, I laid bleeding to death. I had just seen my only baby girl for the first time without the fuzziness of an ultrasound. She was beautiful. For 7 hours, I laid in recovery…

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Meet Mary and Robert

(Submitted by Pat Wright) HPE is not a rare disorder in our immediate family, 50% of the children have HPE, and it has not prematurely taken the lives of the affected children, as one is 32-years old and the other…

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Songs for your journey of HoPE

Music often helps us get through different phases in our lives. We want to know what kind of music HPE families listen to, as they experience different moods. We have created some playlists on the Families for HoPE Pinterest board for different moods/themes!…

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Jacqui’s Playlist

Music Therapy for Jacqui written by Maury Smith One of the special things about my 17-year old daughter, Jacqueline, is the effect that music has on her.  She loves most songs but there are a select few that cause her…

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Meet Maddox

Maddox’s parents–Philip and Hailey Brewer–have shared Maddox’s story in honor of Holoprosencephaly Awareness Week.  Check it out by clicking on the photo below . . .

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Bobby’s HoPE

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Unsung Heroes

In our journey with HPE, there are many people who make a difference . . . but there are some who are quiet, unsung heroes. . . those whom we can never thank enough, yet we owe them the world.

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March 10-16 is Holoprosencephaly Awareness Week!

March 10-16 has been designated as Holoprosencephaly Awareness Week! Over the course of the next several days, we would ask that you look for opportunities to share the HoPE you’ve found in Holoprosencephaly.  Use your favorite social media accounts to…

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