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

Get Involved

CONNECT AND MAKE A DIFFERENCE

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.

Connect

BUILDING COMMUNITY

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.

FACEBOOK SUPPORT GROUPS

We host over 100 topic-focused and location-based 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.

Find Your Group

If you don’t have Facebook, reach out to us to be connected to a local HIE family.

Need additional information or support?
 Contact us

SHARE YOUR HIE STORY

HEAL, EMPOWER, & SHINE A LIGHT FOR OTHERS

One of the ways many HIE families work through the trauma of their journey is sharing their story to help other families who will find us in their own HIE journey. We hope you’ll take a few minutes and share yours with us. We’ll publish it to our Family Stories blog!

Share Your Story

GET SOCIAL

LIKE, FOLLOW, SHARE, CONNECT

Be sure to follow Hope for HIE on our public social media sites for updates, connection and even some fun giveaways!

ADVOCATE

LET YOUR VOICE BE HEARD AND 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.

 

SIGNUP

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