888-533-4443 Info@FamiliesforHoPE.org 1219 N. Wittfield Street, Indianapolis, IN 46229

Tag: HPE

New NIH Study on Environmental Determinants of Holoprosencephaly

New NIH study on Environmental Determinants of Holoprosencephaly  We understand only a fraction of the causes of holoprosencephaly and what leads to the wide spectrum of clinical features seen in patients with holoprosencephaly. In this new environmental study, we are trying to better understand the different factors that can contribute to holoprosencephaly and its presentation …

What equipment do I really need at home? 

Description: Bring pictures/ dimensions (length and width of floor space it takes up) of equipment that you already have. Bring in your wish list of equipment (type/brand would be helpful but not necessary).    Bring basic dimensions of your living room, bathroom, child’s bedroom as well as the width of the doorways (opening available vs …

Registration is open for 2016 Family Conference on HPE

We want you to join us as A Family of HoPE at the 2016 Family Conference on Holoprosencephaly in Dallas, Texas on July 12-15 presented by Families for HoPE, Inc. and Carter Centers for Brain Research in Holoprosencephaly and Related Malformations. This conference is for families and persons who are affected by HPE, their extended …

Our mascot needs a name . . .

Before Families for HoPE was formed in 2006, there’s a character/animal that has served as our unofficial mascot in the HPE community, and that mascot is the frog.  It all started following the passing of Harrison Stauft, forever known as the little boy who loved frogs–specifically, five green and speckled frogs.  This was a song …

What does HoPE look like?

What does HoPE look like? By: Kelli Aardal Goin Have you ever sat and thought about how important HoPE is in our lives? While it is possible to live without a lot of things, it is impossible to live without HoPE. It wasn’t until Abbey was diagnosed with Holoprosencephaly that I truly understood that concept …