Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy

FOR PARENTS

GET LOCAL

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 outreach@hopeforhie.org to see how you can be connected to other local families.

Find Your Group

GET SOCIAL

SOCIAL MEDIA

Be sure to follow Hope for HIE on our public social media sites for constant updates and interaction.
Facebook
Twitter
LinkedIn

FACEBOOK SUPPORT GROUPS

We have a wide array of topic-based and geographical support groups found on Facebook. Upon requesting, you will be sent a few questions to be verified before adding you into our network. All questions need to be answered before you will be granted entry.

If you are a legal parent or guardian of a child with HIE, click here to request our main parent forum.

If you are new to the journey, consider joining Hope for HIE – New to HIE. Our New to HIE group has designated administrators and moderators who come with years of experience and are standing by to support the unique needs of our new families who find us.

If you are a grandparent, aunt, uncle or other extended family member, consider joining Hope for HIE – Extended Family Support.

Need additional information or support? Contact us by sending an email and one of our board of directors will reach out.

RETREATS

THE POWER OF CONNECTION

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!

BIENNIAL CONFERENCE RETREATS FOR MOMS

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.

BIENNIAL REGIONAL MEET UP RETREATS

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.

FUTURE RETREATS

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!

GET INVOLVED

SPEAK UP

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.

The following is a list of individuals and institutions that will benefit from hearing from you:
  • Local – Elected officials (school board, municipal government, etc.), hospitals, non-profits, businesses
  • County – Elected officials (commissioners, board, etc), county-based service providers, county departments, advisory boards
  • State – Elected officials (state senators, representatives, etc.), appointed officials, state-based service providers, advisory boards
  • Federal – Elected officials (senators, representatives, president), appointed officials, federally-based service providers

SAY THANKS

Saying thank you to individual and institutions that make a difference in our lives and the lives of our loved ones is important. Use the editable certificate appreciation to recognize the individuals or institutions in your community that make a difference.
  • Download the certificate of appreciation
  • Open the document using Adobe Acrobat Reader (download it here for free)
  • Enter the name of the individual or institution in the editable light blue field in the middle of the certificate.
  • Print the certificate of appreciation. You can dress it up with a frame or certificate holder from your local arts and crafts or office supply store.
  • Say thanks and share a photo on Facebook or Instagram, if possible.

REQUEST A PROCLAMATION OR LETTER OF SUPPORT

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.

  • Click here if you need help figuring out who your elected officials are.
  • Download the editable template: Google Doc or Microsoft Word
  • Edit the portions of the letter in red.
  • Mail your letter.
  • Generally, these requests take time to fulfill. Feel free to follow-up if you don’t receive a response within a couple of weeks.
  • Your elected officials may ask you to meet with them or participate in a photo-op. This is optional and should not have any impact on whether or not a letter of support or proclamation is issued.
  • Take a photo of the document when you receive it and share it via social media. Please email a copy to David Ford and he will share it with the Board of Directors and on the organization’s website and social media.

VOLUNTEER WITH US

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.

IN REMEMBRANCE

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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