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.
Category: Infographic Tags: balance, birth to three, cerebral palsy, coordination, cp, early intervention, first steps, holoprosencephaly, infants and toddlers, motor, movement, muscle, posture, programs, reflex, therapies, tone
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 …
Category: Embrace the Journey, Guest Authors Tags: #familiesforhope, #holoprosencephaly #hope, #sharingHoPE, awareness, Carter Centers, diagnosis, disability, Embrace the Journey, family, holoprosencephaly, HoPE, HPE, prenatal, special needs
A mother and her son’s journey with Treacher Collins Syndrome and HPE
Category: Embrace the Journey, Guest Authors Tags: #familiesforhope, #gotHoPE, #sharingHoPE, awareness, conference, diagnosis, happy, holoprosencephaly, HoPE, prenatal, treacher collins
Tag: holoprosencephaly
HPE Awareness Week
Posted: February 27, 2022 by Leslie, Sammy's mom
Holoprosencephaly Awareness Week is March 20-26, 2022.
Category: Holoprosencephaly Awareness Week Tags: activities, awareness, holoprosencephaly, hpe awareness week
NEWS: Families for HoPE Names Executive Director
Posted: October 22, 2021 by Leslie, Sammy's mom
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.
Category: General, News Tags: executive director, holoprosencephaly, news, susan millender
Paint with HoPE
Posted: March 21, 2021 by Leslie, Sammy's mom
Category: Holoprosencephaly Awareness Week, Special Events Tags: #hpeawareness, activity, awareness, canvas, holoprosencephaly, paint, virtual
Important Update from Families for HoPE
Posted: May 17, 2020 by Leslie, Sammy's mom
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).
Category: HPE Conference Tags: #holoprosencephaly #hope, conference, holoprosencephaly, HoPE
HPE & CP
Posted: October 19, 2019 by Leslie, Sammy's mom
Almost all children with holoprosencephaly have cerebral palsy.
Category: Infographic Tags: balance, birth to three, cerebral palsy, coordination, cp, early intervention, first steps, holoprosencephaly, infants and toddlers, motor, movement, muscle, posture, programs, reflex, therapies, tone
Roxanne Steele
Posted: July 22, 2019 by CharlieDawns momma
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.
Category: Guest Authors, Inspiration Tags: #holoprosencephaly #hope, #sharingHoPE, awareness, disability, holoprosencephaly, HoPE, HPE, life, special needs
Not Broken
Posted: July 3, 2019 by CharlieDawns momma
She is not broken She does not need fixing
Category: Inspiration Tags: #familiesforhope, #sharingHoPE, diagnosis, disability, Embrace the Journey, family, holoprosencephaly, HoPE, HPE
Conference Registration Fee Payment
Posted: April 8, 2019 by Leslie, Sammy's mom
2020 Family Conference on Holoprosencephaly Great Wolf Lodge & Conference Center – Mason, Ohio June 14-18, 2020
Category: HPE Conference Tags: 2020, conference, Great Wolf Lodge, holoprosencephaly, Mason, Ohio, registration
Never Lose HoPE
Posted: July 30, 2018 by CharlieDawns momma
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 …
Category: Embrace the Journey, Guest Authors Tags: #familiesforhope, #holoprosencephaly #hope, #sharingHoPE, awareness, Carter Centers, diagnosis, disability, Embrace the Journey, family, holoprosencephaly, HoPE, HPE, prenatal, special needs
Having HoPE will give you courage
Posted: March 7, 2018 by CharlieDawns momma
A mother and her son’s journey with Treacher Collins Syndrome and HPE
Category: Embrace the Journey, Guest Authors Tags: #familiesforhope, #gotHoPE, #sharingHoPE, awareness, conference, diagnosis, happy, holoprosencephaly, HoPE, prenatal, treacher collins