- Who We Are
- What is HIE?
- For Parents
- For Clinicians & Partners
- Hustle for Hope 5K
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, fundraising events, and other opportunities to connect.
Click here to find your local group. If you can’t find one, email firstname.lastname@example.org to see how you can be connected to other local families.
Hope for HIE sponsors a variety of in-person opportunities to connect with others in our community. All of these events are planned by volunteers, who are fellow HIE families and parents. What started as six moms coming together for a weekend to relax, has grown into different experiences sponsored by Hope for HIE.
We encourage all families in our network to get together – connect with local families, moms, dads, extended family. Have you connected with a few families? Plan a weekend family meet up. We are here to help give you ideas so you can also be empowered over your experience and journey with HIE. There is no magic formula to connecting. It’s taking the chance and a little planning and you can create your own experience!
Every two years, Hope for HIE sponsors a large “mega” conference retreat for moms. These retreats are held at a hotel and conference center and focus on celebrating the connections we have as a large community, provide a variety of sessions focused on self-care, healing through trauma and connecting with others to spark long-lasting relationships. These are more structured experiences with opportunities to connect through on and off-site experiences and have a large community group feel.
We have hosted Conference Retreats in the mountains of Tennessee, the lakes of Michigan, Hill Country in Texas, and the foothills of Denver, to name a few.
Our next Conference Retreat is scheduled for 2021, and will be “Hope by the Beach”, held in Florida.
On the down year from the Conference Retreat, Hope for HIE will facilitate regional meet up retreats. These retreats are typically held at smaller venues such as beach houses, or cabins, and range from 10-20 attendees where the goal is to simply “meet up” and enjoy each other’s company. These focus on a loose structure, giving individuals flexibility to get what they need out of the weekend. Some group activities are planned, but mostly things happen organically and are driven by attendees. Some attendees prefer more solitude, to actually get uninterrupted sleep, and some prefer small group outings to take advantage of the area they are in – trips to the beach, hikes, shopping, etc. The goal is always to foster connections in a laid back environment.
In 2019, we hosted two family retreats — one on the East Coast of the US, and one on the West Coast of the US.
All of our retreats are all spearheaded and “hosted” by members of our network, and Hope for HIE helps with logistics and registration. We currently have about 200 dads in our dedicated group on Facebook, with great interest to kick off a dad retreat through Hope for HIE. We look forward to posting the details when it’s ready to go!
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.
You can get involved with helping us reach out, provide resources and connect with families by volunteering. Whatever your skill set is, we can definitely put it to use for a great cause.
Click here to find out how you can help.
For those children who succumb to their injuries, we cherish their legacies and grieve with their families. Hope for HIE works to ensure that no one faces HIE alone, and is committed to providing support for families facing the loss of their beautiful children gone too soon.
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