We are continuously looking at ways to build community and improve the quality of life for children and families affected by HIE through Awareness, Education and Support.
Hope for HIE began with a virtual network of parents seeking to connect after their child had been diagnosed with HIE (Hypoxic Ischemic Encephalopathy). We have families all around the globe, and many local groups that host meet ups, awareness and fundraising events, and other opportunities to connect.
In April 2016, Hope for HIE launched the first global HIE Awareness Month. Every year, we gather the global HIE community to participate in spreading awareness, advocating for our community needs, generating support and further educating on HIE and its impacts, sharing the stories of our incredible community.
We hold April 20th for HIE Remembrance Day, paying tribute to our families whose HIE children have gone too soon.
Join the global HIE community every April and look for ways to be involved.
The Hustle for Hope 5K is one of many activities taking place throughout the month of April, HIE Awareness Month, to increase awareness, education, and support through Hope for HIE, the premiere global organization dedicated to improving the quality of life for children and families.
Hope for HIE offers flexible formats to meet the needs of its global community, allowing for flexibility, diversity and inclusion including the “virtual” format and in-person hosted events. Participants pick a date, time and location (indoors or outdoors) that works best and can complete the 5K by any form of mobility (walk, run or roll).
Complete it all at once or break it up over time. We encourage you to sign up and post on social media to help raise awareness for this great cause using the hashtags of #hustleforhope and #hopeforhie!
Interested in getting involved with Hope for HIE, but unsure where to start? Curious how your skills and strengths can be used to make a positive impact on the global HIE community?
Volunteering across the different opportunities we have is an easy way to get connected with the HIE community, make connections, and give back to ensure no family faces HIE alone and feels supported in their journey. Whether it’s through events, our care committee, writing for our blog, or joining in on advocacy, we have many ways for anyone to be a part of our community.
We host over 100 topic-focused and location-based peer support groups found on Facebook. Upon requesting, you will be sent a few questions to be verified before adding you into our network.
If you don’t have Facebook, reach out to us to be connected to a local HIE family.
We all have the power to influence decision-makers and the systems, policies and conditions they create for our loved ones. For example, you could speak briefly during the comments portion of your local school board meeting to acknowledge the wonderful support your loved one receives or take five minutes to send an email to your state representative in order to voice your support for or concerns about legislation that impacts the quality of medical care your loved one receives.
Enlisting elected officials by requesting a proclamation or letter of support can be an effective way to introduce them to Hope for HIE and educate them about HIE and the organization’s mission. Use the editable template to request a letter or support or proclamation. Please send an email to David Ford before you contact state and federal legislators to avoid duplication.
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