It is with broken hearts that we share the news that our beloved board member, Heather Dawn Rinard, has succumbed to her brave battle with cancer. Heather leaves behind her loving husband Matt, son Gavin, and daughters Sami, Izzy and Charliedawn. Heather joined our HPE family with the birth of her daughter, Charliedawn in 2012, …
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).
Results from the 2019 Families for HoPE Costume Contest
Registration is open for the 2019 HoPE Dads Retreat to be held in Scottsdale, Arizona on October 11, 12, 13 and 14, 2019! This retreat is limited to only 14 dads so don’t delay in registering! Vision: To bring HPE dads together for a weekend retreat for the purpose of finding and sharing hope through …
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.
As I walked into the conference center that Sunday night in 2018, seeing all those kiddos–some I recognized, many I didn’t–but, it felt like I was home with “my people”.
She is not broken She does not need fixing
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 …
Holo. . . what?
A mother and her son’s journey with Treacher Collins Syndrome and HPE