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 …
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 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 …
Thank you to Barb Brown for your $15 donation to Families for HoPE on #GivingTuesday! Thank you to Jane Merdic for your $15 donation on #GivingTuesday to Families for HoPE. So pleased and grateful to Mary Gamache for your $100 donation to Families for HoPE on this #GivingTuesday! Thank you so much to Betsy Jochner …
HPE families, please comment below and tell us what you’re most thankful for this year!
Tag: HPE
Hercules’ Journey
Posted: March 1, 2017 by Leslie, Sammy's mom
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 Leslie, Sammy's mom
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
What equipment do I really need at home?
Posted: May 18, 2016 by Leslie, Sammy's mom
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 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 Leslie, Sammy's mom
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
Thank you, thank you, thank you!
Posted: December 2, 2014 by Leslie, Sammy's mom
Thank you to Barb Brown for your $15 donation to Families for HoPE on #GivingTuesday! Thank you to Jane Merdic for your $15 donation on #GivingTuesday to Families for HoPE. So pleased and grateful to Mary Gamache for your $100 donation to Families for HoPE on this #GivingTuesday! Thank you so much to Betsy Jochner …
Category: #GivingTuesday, Fundraising Tags: #givingtuesday, #sharingHoPE, holoprosencephaly, HoPE, HPE, thanks
I’m thankful for. . .
Posted: November 26, 2014 by Leslie, Sammy's mom
HPE families, please comment below and tell us what you’re most thankful for this year!
Category: #GivingTuesday, Holidays, Inspiration Tags: #thanksgiving, giving, HPE, thanks