July 2024

THIS IS WHAT HOPE LOOKS LIKE!

Hope looks like a lot of things for our families -- and we've loved seeing so many examples shared over the last several weeks - kids out there paddleboarding, cooking with their minds, causing mischief, playing the piano and enjoying some shopping.

Hope also looks like advancing support, research and advocacy, and we have SEVERAL ways families can get involved. Whether that's filling out research surveys, joining our Peer Mentor program, spreading awareness, or hosting a fundraiser, there's never a shortage of ways to get involved!

Be sure to check out the following links:

Betsy

Betsy Pilon

Executive Director

Support Hope for HIE

In the Weeds: Tools for Navigating Research

Understanding and evaluating research is crucial for informed health decisions, especially with HIE and the many ways it can impact someone. We're always working to build more resources and wanted to share a few below on evaluating and understanding what you're reading out there and how it may or may not apply to your child.

Navigating Research Articles

This resource will help you tackle some of the key concepts to help you better navigate health-related research and make informed decisions.

Learn More

Evaluating Research Articles

Evaluating research articles relevant to your child’s medical diagnosis is challenging but essential for informed health decisions. That’s why we’ve developed a Question Prompt Tool to help you critically assess the relevance and reliability of research articles you find.

Learn More

BECOME A PEER SUPPORT MENTOR

Help Light the Path for Others!

We're looking for experienced peers (2+ years in the community) who represent a range of different impacts and outcomes, backgrounds, ethnicities, and family structures to become Peer Support Mentors.

If you have a heart for giving back and want to support others on their HIE journey, apply to become a Peer Support Mentor and join Hope's amazing team!

Apply by or before July 31st!

New to HIE/HIE Family Mentor Application

New to Loss Mentor Application

HAPPENING SOON: SUPER SIBS CONNECTION CIRCLE

Don't forget to register!

Annie Gunning -- Hope for HIE's Child Life Specialist -- is hosting a virtual Super Sibs Connection Circle to give each Super Sib an opportunity to meet, ask questions, interact, and connect with others within their age group who "just get it."

Don't forget to register in advance using the links below!

SUPER SIB CONNECTION CIRCLE REGISTRATION

SUPER SIB LOSS CONNECTION CIRCLE REGISTRATION

MILD HIE FAMILIES: GIVE YOUR INPUT ON SCHOOL-AGE OUTCOMES

Register Now!

The COOL PRIME trial studying Mild HIE and Cooling is underway, and we are excited to give input to this trial (and have been since the beginning!).

If your child with HIE was diagnosed with MILD HIE or has a mild HIE outcome, join us on Thursday, August 15 at 2 pm ET for a family input meeting with Dr. Lina Chalak, the principal investigator of COOL PRIME, and Hope for HIE medical advisory board member, to share your experiences and drive forward research priorities for an upcoming study extension!

Take Three: Awareness, Education, Support

Families often feel like they have to learn another language to understand a HIE diagnosis and what it may cause. We partner with our Medical Advisory Board and Certified Child Life Specialists to create resources, like monthly Q&As, building health literacy for our global community.

Q&A PLAYLISTS

Research is not just the responsibility of scientists and doctors. It is important that patients and families participate to whatever extent they are able. Learn more about the safety and efficacy of clinical trials, and stay up-to-date with our current and upcoming research by visiting our Clinical Trial Hub.

LEARN MORE

Whether you are a parent, an adult with HIE from a neonatal or pediatric-acquired cause, an extended family member or friend, a child growing up with HIE, or a SuperSib, we have peer support for you, and continue to build out our programs and services regularly as we grow as an organization.

GET SUPPORT

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CONTACT US

Outreach@hopeforhie.org

PO Box 250472

West Bloomfield Township

Michigan 48325

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