Tag: HPE
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 …
Remember Father’s Day and help give back to Families for Hope! Click here to order thru Amazon Smiles for Fathers Day
Description: Bring pictures/ dimensions (length and width of floor space it takes up) of equipment that you already have. Bring in your wish list of equipment (type/brand would be helpful but not necessary). Bring basic dimensions of your living room, bathroom, child’s bedroom as well as the width of the doorways (opening available vs …
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 …
Before Families for HoPE was formed in 2006, there’s a character/animal that has served as our unofficial mascot in the HPE community, and that mascot is the frog. It all started following the passing of Harrison Stauft, forever known as the little boy who loved frogs–specifically, five green and speckled frogs. This was a song …
Category: Inspiration, Leslie Tags: five green and speckled frogs, frog, green, harrison, HoPE, HPE, mascot, name, racing, speckled, symbol
What does HoPE look like? By: Kelli Aardal Goin Have you ever sat and thought about how important HoPE is in our lives? While it is possible to live without a lot of things, it is impossible to live without HoPE. It wasn’t until Abbey was diagnosed with Holoprosencephaly that I truly understood that concept …
Please feel free to download and share these items on social media to help raise awareness of HPE during Holoprosencephaly Awareness Week 2015, March 23-29.
Tag: HPE
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
Make Dad Smile
Posted: June 2, 2016 by CharlieDawns momma
Remember Father’s Day and help give back to Families for Hope! Click here to order thru Amazon Smiles for Fathers Day
Category: Uncategorized Tags: amazon smiles, Father's Day, HPE
What equipment do I really need at home?
Posted: May 18, 2016 by CharlieDawns momma
Description: Bring pictures/ dimensions (length and width of floor space it takes up) of equipment that you already have. Bring in your wish list of equipment (type/brand would be helpful but not necessary). Bring basic dimensions of your living room, bathroom, child’s bedroom as well as the width of the doorways (opening available vs …
Category: General Tags: Equipment, home, HPE, pictures
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
Our mascot needs a name . . .
Posted: September 27, 2015 by Leslie, Sammy's mom
Before Families for HoPE was formed in 2006, there’s a character/animal that has served as our unofficial mascot in the HPE community, and that mascot is the frog. It all started following the passing of Harrison Stauft, forever known as the little boy who loved frogs–specifically, five green and speckled frogs. This was a song …
Category: Inspiration, Leslie Tags: five green and speckled frogs, frog, green, harrison, HoPE, HPE, mascot, name, racing, speckled, symbol
August 22 – Racing for HoPE 2015
Posted: August 22, 2015 by Leslie, Sammy's mom
Category: Racing for HoPE Tags: ARCA/CRA, baer field speedway, holoprosencephaly, HPE, Josh Timmerman, liam, racing for HoPE, rempel
What does HoPE look like?
Posted: August 19, 2015 by CharlieDawns momma
What does HoPE look like? By: Kelli Aardal Goin Have you ever sat and thought about how important HoPE is in our lives? While it is possible to live without a lot of things, it is impossible to live without HoPE. It wasn’t until Abbey was diagnosed with Holoprosencephaly that I truly understood that concept …
Category: Guest Authors, Inspiration, Perspectives Tags: abbey, HoPE, HPE, kelli goin
HPE Awareness Week 2015 – Social Media Tools
Posted: March 21, 2015 by Leslie, Sammy's mom
Please feel free to download and share these items on social media to help raise awareness of HPE during Holoprosencephaly Awareness Week 2015, March 23-29.
Category: Holoprosencephaly Awareness Week, Holoprosencephaly Awareness Week 2015 Tags: 2015, 2015 HPE Awareness Week, awareness, holoprosencephaly, HoPE, HPE