Tag: holoprosencephaly
Updated on August 3, 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.
Updated on August 3, 2019 by CharlieDawns momma
She is not broken She does not need fixing
Updated on August 3, 2019 by Leslie, Sammy's mom
2020 Family Conference on Holoprosencephaly Great Wolf Lodge & Conference Center – Mason, Ohio June 14-18, 2020
Updated on June 19, 2019 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
Updated on April 27, 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
Posted on January 23, 2018 by Leslie, Sammy's mom
Last week, Pearl Joy Brown’s dad, Eric Brown, was asked to speak at a conference in Washington, DC. Thank you, Eric, for sharing your humble spirit, your sincere and heartfelt words, and your beautiful photos.
Updated on January 14, 2018 by CharlieDawns momma
By Amy L. Springer, Guest Author I learned that I was pregnant February 24, 1994. I had a sonogram like normal and all was good. I later started to have problems with bleeding, so we did another sonogram, which showed the baby to have a “lemon-shaped head” and I had placenta previa so a follow …
Category: Guest Authors Tags: #holoprosencephaly #hope, diagnosis, disability, Embrace the Journey, happy, holoprosencephaly, HoPE, HPE, journey, laughter, special needs
Updated on March 17, 2017 by CharlieDawns momma
Embrace the Journey with Hercules
Category: Embrace the Journey, Guest Authors Tags: allegiant airlines, ana vindas, hercules, holoprosencephaly, HoPE, HPE, journey, pilot, plane, Service dog
Updated on March 17, 2017 by CharlieDawns momma
An HPE mom shares how she has embraced the journey with HPE
Updated on September 30, 2016 by Leslie, Sammy's mom
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 …
Tag: holoprosencephaly
Roxanne Steele
Updated on August 3, 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
Updated on August 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
Updated on August 3, 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
Updated on June 19, 2019 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
Updated on April 27, 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
Pearl Joy Brown
Posted on January 23, 2018 by Leslie, Sammy's mom
Last week, Pearl Joy Brown’s dad, Eric Brown, was asked to speak at a conference in Washington, DC. Thank you, Eric, for sharing your humble spirit, your sincere and heartfelt words, and your beautiful photos.
Category: Child of HoPE, Guest Authors, Inspiration, Perspectives Tags: eric brown, eric brown photography, holoprosencephaly, HoPE, life, pearl joy brown, ruth
There is always HoPE
Updated on January 14, 2018 by CharlieDawns momma
By Amy L. Springer, Guest Author I learned that I was pregnant February 24, 1994. I had a sonogram like normal and all was good. I later started to have problems with bleeding, so we did another sonogram, which showed the baby to have a “lemon-shaped head” and I had placenta previa so a follow …
Category: Guest Authors Tags: #holoprosencephaly #hope, diagnosis, disability, Embrace the Journey, happy, holoprosencephaly, HoPE, HPE, journey, laughter, special needs
Hercules’ Journey
Updated on March 17, 2017 by CharlieDawns momma
Embrace the Journey with Hercules
Category: Embrace the Journey, Guest Authors Tags: allegiant airlines, ana vindas, hercules, holoprosencephaly, HoPE, HPE, journey, pilot, plane, Service dog
Embrace the Journey with Carol-Lynn
Updated on March 17, 2017 by CharlieDawns momma
An HPE mom shares how she has embraced the journey with HPE
Category: Embrace the Journey, Guest Authors, HPE Conference Tags: carol-lynn, conference, dallas, Embrace the Journey, holoprosencephaly, HPE, Jody, slider
New NIH Study on Environmental Determinants of Holoprosencephaly
Updated on September 30, 2016 by Leslie, Sammy's mom
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 …
Category: Research Tags: environmental, holoprosencephaly, HPE, NIH, pregnancy, study, survey