Hope for HIE Joins ISAN

HIE (Hypoxic Ischemic Encephalopathy) is one of the leading causes of Infantile Spasms, a rare but potentially catastrophic form of epilepsy. In 2019, Hope for HIE was invited to join the Infantile Spasms Action Network to collaborate with other patient groups, researchers and clinicians to move forward research and awareness so patient populations can be educated on what IS looks like and seek quick treatment.

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Hope for HIE Engages TREND Community

In 2018, a member of Hope for HIE's community connected our organization to TREND Community, a company that was started by two moms who had originally connected through a Facebook group dedicated to a specific diagnosis each of their children shared. Over the last several years, these two moms saw the qualitative data that was shared about the condition and was leading to better treatment options for their children. Thus, TREND Community was formed. An organization focused on "turning anecdotes into evidence".

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A new diagnosis, a new treatment

Seizures have been a concern for much of Lucy’s life.

Initially, she was weaned off seizure medication before her first birthday when the seizures she had in the NICU hadn’t returned. That was until one day when then-two-year-old Lucy woke up and her parents knew something wasn’t right, later learning the seizures had returned.

In the three years since, the concern about seizures has always been present. But late last year, the need to do something became incredibly important.

 

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Teaching the world to sign

Thinking of her brother getting frustrated when others couldn’t understand him led a teen in the UK to start her own movement to promote knowledge of sign language.

Jade’s little brother, Christian, uses sign language to communicate, and is continuing to build his vocabulary.

 

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The color gray

Watching her daughter on stage, reciting a poem she wrote, is a memory Karla Contreras will never forget.

Karla was surprised when she learned her 8-year-old daughter Elisa, who suffered HIE at birth, would be sharing a poem at her school's poetry slam. But as soon as she got the note from her daughter's teacher, Karla knew she wouldn't miss it.

 

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