Tag: HPE
Coloring is a hot trend for adults, and gathering a group of individuals together to color is a unique way to raise awareness of HPE! If you are interested in using coloring as a way to raise awareness of HPE and raise funds for Families for HoPE, we can help you do so. If you …
Category: Fundraising, Holoprosencephaly Awareness Week Tags: awareness, balloons, coloring, community, event, fundraising, HoPE, HPE, pencils, wristbands
I am often asked why I smile so much. Often, these inquisitive ones are looking only at the difficulties in caring for a medically fragile child as a 24/7 job. I respond simply, “I can either cry about it or laugh about it; I choose laughter.” Humans are social creatures, and humor is one of the …
Thumbprints on our hearts
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