Awareness Month Wrap-Up
HIE Awareness Month 2021 has finished, and the team players of #TeamHope ended with a big WIN for Awareness, Education and Support.

We coordinated our efforts once again, worldwide, with several key organizations recognizing our community at large, and dedicating space to acknowledging and committing to meeting the unmet needs of our community.

We've heard from thousands of our families, shared stories, celebrated our Team Hope members -- from our families to our Medical Advisory Board to our Partners in Hope to our Council of Advisors.

We came together for our annual HIE Remembrance Day, supporting our loss families through recognition of their children, and creating a worldwide wave of light giving support for their journey. You can view our online remembrance by clicking here.

We connected over 250 new families this month, a testament to our outreach and awareness efforts, and we've had over 30 new NICU contacts requesting our newly diagnosed family boxes and NICU educational materials. We are working hard to get these orders fulfilled and these important materials into the hands of new families.

Lastly, we had incredible input and ideas shared by HIE families to build tools to tell their stories. We want to recognize Melanie Riggins, long time volunteer and talented graphic designer, for her beautiful designs and templates of our annual theme of Team Hope, and Lindsey Garrett, one of our incredible HIE parents, for helping to build the daily story prompts across social media that opened thousands of conversations about HIE to the world.
Aspect Imaging Becomes Partner in Hope

We are excited to welcome Aspect Imaging as a Partner in Hope, with overlapping missions of improving the quality of life for children and families impacted by the neonatal brain conditions, such as HIE.

In partnership with Aspect Imaging, Hope for HIE presented a parent panel with Nick Burton, Dr. Tooba Rehman and Betsy Pilon at the Synova Associates NICU Leadership Forum giving insight to MRI Day, and the parent experience with HIE in the NICU.

You can learn more about the partnership with Aspect Imaging by clicking here.


Webinars & Presentations in April
New England Perinatal Society Meeting
Dr. Anna Sagaser from Maine Medical Center presented survey results from information we collected in partnership with Drs. Alexa Craig, Anna Sagaser and Monica Lemmon. This published research is calling for trauma-informed care as a best practice, including NAMING the diagnosis.

We are so grateful for everyone who has been a part of this and other initiatives. They are making a difference.

Clubhouse App: NICU Club Talk about HIE
We were grateful to spread more awareness about HIE through the NICU Moms Club on the Clubhouse App in April. We also launched our own Hope for HIE Club on the app, so if you are a member, please join us!

12th International Newborn Brain Conference Series
Betsy Pilon also moderated a riveting discussion on Parents and Neonatal Brain Care, including communication and involvement in research, with Drs. Monica Lemmon and Eleanor Malloy through the 12th International Newborn Brain Conference Series in conjunction with the Newborn Brain Society.
Just Say HIE Podcast Launches
We launched our new podcast, JUST SAY HIE, in April!

The name is two-fold: We want to share engaging and empowering family stories that bring the HIE community together in a welcoming way, and we also want to share the importance of communicating a medical diagnosis such as HIE, hypoxic ischemic encephalopathy, to families.

Our first episode is an interview with Annie Goeller, Board of Directors VP of Marketing and Public Relations.

Annie has faithfully served our organization originally as a volunteer, and also served on the Board of Directors for the last five years. She finished out awareness month on the board, and is shifting to participate in our newly formed Council of Advisors.

THANK YOU to Annie for your incredible dedication and work together these last several years. It is appropriate that Annie is finishing out at the end of HIE Awareness Month, as she was instrumental in launching the first one six years ago. Read more about her accomplishments and contributions by clicking here.

You'll want to catch our podcast episode with her where podcasts are available -- we are on iTunes, Spotify, Google Podcasts, Amazon Music, Audible and more.

Podcast Interviews
In addition to launching our podcast, Hope for HIE was included on two different podcasts spreading awareness during April:
Medical Advisory Board Educational Events in April
We added to our cache of insightful educational events through our Medical Advisory Board. We want to thank Drs. Mohamed El-Dib, Monica Lemmon, Beth Swartz, Hannah Glass, Renee Shellhaas, & Lina Chalak for sharing your expertise with our community.

In case you missed them live, you can access these important topics below:
TEAM HOPE SPOTLIGHT & REFLECTION:
Adrienne Mageors, Council of Advisors Member
Mom to Lucy, Resident of Texas

Once we received Lucy's diagnosis, my sister offered to put a CaringBridge page together for us so we could easily share updates with family and friends.

Through that page, a friend of hers read our story and reached out to her. She knew someone with a very similar story and connected me to a woman named Amy. Amy's son Oliver had experienced an almost identical situation just 13 months prior.

Ironically, Oliver's older sister was named Lucy. Amy was my connection to Hope for HIE, and for that, I am eternally grateful.

At the time, HFH only served about 500 families. Today, we are a network of over 6,500 families across the globe. Finding Hope for HIE at that moment was so pivotal for our family. I've built amazing connections and learned from some of the strongest, wisest women along the way.

What has Lucy taught me? We all deserve a chance. We are all worthy of the fight. Our journeys may look different than the person beside us, but that doesn't make them any less valuable.

My favorite quote is from another incredible HIE mama, and dear, dear friend Jennifer Kegyes - "In her own time, in her own way."
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