Survey link: Tinyurl.com/HIESleep We’ve heard from thousands of families that sleep issues are one of the TOP unmet needs of our community, and across all outcomes and impacts, impacting the entire family. NOW IS YOUR CHANCE TO BE HEARD & DRIVE RESEARCH!!! We are a part of a research proposal to explore sleep issues with HIE, beginning in the NICU […]
As a parent or caregiver of a medically complex child, you’re likely aware of the discomfort they may experience when visiting the dentist. From navigating inaccessible spaces to managing heightened sensitivities, every aspect of the dental visit can pose unique challenges. It may feel as if you’re constantly navigating these hurdles in order to provide them with the oral health […]
It’s no secret that many people have some aversion to the dentist; those connected to medically complex children are likely even more familiar with the challenge of maintaining oral health and accessing professional care. Dr. Matt Mara, DDS., a practicing general dentist, assistant professor of general dentistry at Boston University, oral health researcher, Hope for HIE medical advisory board member, […]
As the saying goes, “It takes a village,” and at Hope, we have a strong one. Every month, our HIE Peer Perspective series brings together committed members of the HIE community to share their valuable insights into the diverse impacts and outcomes of HIE, offering firsthand experiences and guidance on navigating its various challenges.In our latest session, parents from our […]
Epilepsy is one of the largest impacts from HIE, Hypoxic Ischemic Encephalopathy. Children across all outcomes can develop epilepsy, and HIE is a leading cause of several rare types of epilepsy such as Infantile Spasms, Lennox-Gastaut Syndrome, and ESES. Since seizures and HIE are so common, we recommend all families learn more about Seizure Action Plans, and go through Seizure First Aid training. Hope for HIE also supports all legislative efforts to improve the prevalence of Seizure Action Plans and Seizure First Aid through the Seizure Safe School campaign through the Epilepsy Foundation.
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