Holoprosencephaly Awareness Week is March 20-26, 2022.
Families for HoPE recently welcomed Susan Millender as Executive Director. Millender is the first person to fill the role for the Indianapolis-based nonprofit organization in its 16-year history.
After careful consideration, we have arrived at the difficult decision to cancel the Family Conference on Holoprosencephaly which had been rescheduled for June 2021 (postponed from June 2020).
Almost all children with holoprosencephaly have cerebral palsy.
Written by Roxanne Steele Growing up in Indiana in the 1970’s and 80’s, I have to admit I never encountered many people who were different. Yes different races and economic factors but not anyone with any real disability.
She is not broken She does not need fixing
2020 Family Conference on Holoprosencephaly Great Wolf Lodge & Conference Center – Mason, Ohio June 14-18, 2020
Guest Author: Melissa, Isaiah’s mom Our journey started on January 11, 2016 when we found out we we were pregnant with Isaiah. When I was 18 weeks, my primary OBGYN noticed something wrong with Isaiah’s head. He wasn’t sure what was going on, so he sent us to a maternal fetal medicine specialist. This doctor …
A mother and her son’s journey with Treacher Collins Syndrome and HPE