Tag: holoprosencephaly
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
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.
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
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
An HPE mom shares how she has embraced the journey with HPE
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 …
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 …
#GivingTuesday is a movement to create a national day of giving on the Tuesday following Thanksgiving, Black Friday and Cyber Monday. On #GivingTuesday, please join Families for HoPE in helping to share the HoPE in Holoprosencephaly. We would love for you to join us with your time, talents, and personality to share the HoPE in …
Tag: holoprosencephaly
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
Pearl Joy Brown
Posted: 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
Posted: January 13, 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
Posted: March 1, 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
Posted: February 27, 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
Posted: 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
Registration is open for 2016 Family Conference on HPE
Posted: January 12, 2016 by Leslie, Sammy's mom
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 …
Category: HPE Conference Tags: conference, dallas, holoprosencephaly, HPE, siblings
#GivingTuesday 2015
Posted: November 30, 2015 by Leslie, Sammy's mom
#GivingTuesday is a movement to create a national day of giving on the Tuesday following Thanksgiving, Black Friday and Cyber Monday. On #GivingTuesday, please join Families for HoPE in helping to share the HoPE in Holoprosencephaly. We would love for you to join us with your time, talents, and personality to share the HoPE in …
Category: #GivingTuesday, Fundraising Tags: #givingtuesday, holoprosencephaly, HoPE