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.
Hope for HIE’s network of over 5,000 families includes many talented people and Lisa Ledson volunteered to serve as Hope for HIE’s ISAN representative.
“When my own daughter was going through Infantile Spasms, it was difficult to find providers in our area with the expertise to identify and treat them aggressively. I want to ensure no family has to go through the same experience I did, so children can get the quick diagnosis and aggressive treatment they need to stop IS. I am honored to serve as the representative from Hope for HIE with ISAN. It’s another way to give back and move forward to increase the awareness and quality of life for our families,” stated Lisa Ledson.
Hope for HIE was also awarded a grant from the Child Neurology Foundation to develop awareness materials and host events with experts in the field of pediatric neurology through a series of Q&A events. Within the first 48 hours of the Q&A’s airing through Hope for HIE’s social media channels, two families in Hope for HIE’s network identified movements consistent with Infantile Spasms, sought medical care, and received a diagnosis and quick treatment.
“We are so grateful for this opportunity to create evergreen resources that our families, and the general public, can use as new families come into our network. The burden of IS on our community is significant, and while it is rare, it does affect many of our families. We have seen the frustrations of our families who cannot get an accurate diagnosis and have to wait for treatment. We also wanted to educate our families who are sometimes hesitant in adding in heavy hitting medications to understand the urgency of needing aggressive and fast treatment for IS and there is no time to wait,” stated Betsy Pilon, Hope for HIE president.
To view Hope for HIE’s Infantile Spasms awareness page, including the Q&A presentations with Drs. Hannah Glass and Adam Numis from UCSF, click below.
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