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- HIElights of Hope
Hope for HIE is the global organization connecting families, researchers, clinicians, biotech and more to improve the quality of life for children and families impacted by neonatal and pediatric-acquired Hypoxic Ischemic Encephalopathy, a type of brain injury that has a wide spectrum of outcomes — anything from minimal impacts to loss of life, and everything in between.
Hypoxic – lack of oxygen
Ischemic – restricting blood flow
Encephalopathy – impacting the brain
HIE is one of the leading causes of death and disabilities for babies and children worldwide. The incidence rate varies depending on access to medical resources but is generally estimated around 2-3 per 1,000 live births. There are also many different causes of HIE, including before, during and after birth.
Hope for HIE is the premiere global organization dedicated to improving the quality of life for children and families facing HIE, with programs and services to better educate families on the myriad of ways HIE can impact someone, to how to build relationships with medical and educational teams, bringing the parent perspective to research projects and looking at ways to decrease the incidence of HIE to reduce the impact on children and families.
“HIE is a significant burden on the children and families it impacts. Many cases are preventable, and others may be through the development of advanced imaging and diagnostics. There is also a significant opportunity to develop new therapeutics to reduce disability and impacts to the child that are in various stages of development. Therapeutic hypothermia was a significant intervention that has absolutely saved many lives that otherwise would have been lost, but the HIE community is in desperate need of additional interventions, programs and services to help children reach their individual potential,” states Betsy Pilon, Executive Director.
Hope for HIE is the premiere global organization dedicated to connecting the HIE community since 2010.
Awareness – Hope for HIE launched the first HIE Awareness Month in April 2016. Since its inception, the organization develops an annual theme and works with its global community to share information, education, and advocacy messaging to improve care, communication and connection for this population. Hope for HIE showcases the breadth and depth of experiences and outcomes across our network during this month, including recognizing our loss families on April 20th – HIE Remembrance Day. HIE manifests in a myriad of ways across child development, and more awareness is needed across the medical community, through research and community supports to best provide care to these children.
Hope for HIE also actively advocates for removing barriers to care and naming the diagnosis for families, as well as collaborates in various collectives in the NICU and child neurology spaces.
Education – Prior to Hope for HIE’s development of educational materials, families often had to wade through medical journals, medical jargon, complex medical terminology without much explanation, and did not have a central point of information that is vetted by Hope for HIE’s multidisciplinary Medical Advisory Board. Health information literacy is a significant need for families of children facing HIE and other complex medical situations and conditions. Hope for HIE works to ensure resources are informational, accessible, and accurate.
Hope for HIE’s comprehensive and strategic outreach to professionals also seeks to educate clinicians and researchers on the trends and topics of unmet needs expressed by HIE children and families to improve care, accessibility and research.
Support – Because HIE is a more rare cause of a NICU or PICU stay, many families find themselves feeling outside the bounds of support offered in the NICU. Seeing this need early on, Hope for HIE has worked to develop a comprehensive online support network now connecting over 6,500 families around the world through over 100 topic, location and outcomes-based groups. Hope for HIE also sponsors in-person meet ups, retreats and events for the community.
Hope for HIE provides newly diagnosed family support packages for families in the NICU or PICU, as well as printed educational materials accessible also through the internet and website. We also provided specific support to our loss community in the wake of losing a child to HIE-related complications. We also have a care committee that is responsible for sending out support packages for families facing difficult hospitalizations with their children. To date, we have sent out over 1,000 care packages worldwide.
Annually, Hope for HIE also provides support to the global community during the Hope for the Holidays giveaway program providing quality of life enhancing equipment not often covered by insurance, adapted toys, experiences, and products that can make family life more accessible and give families a bit of respite for the complex lives that they are living. Hope for HIE has provided roughly $65,000 worth of materials through this program.
Betsy Pilon, Executive Director
David Ford, President
Matt Kegyes, Treasurer
Becky Detlef, Secretary
Crystal Kostick, Member at Large
Jennifer Kegyes, Professional & Family Outreach Chair
We are eager to partner with you to tell the stories of the HIE community. Here are a few ideas for news and story ideas to cover to engage with our families, clinicians, researchers and greater community. Here are a few thought starters:
Note: This online press kit and form is intended for use by the media. If you are not a member of the media and are interested in finding out more about Hope for HIE, visit the main website at HopeforHIE.org. Thank you!
Betsy Pilon, Executive Director firstname.lastname@example.org 248-574-8099
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