February 2022

Are you ready to Hustle for Hope, Betsy?

It's that time once again to get your friends and family together and get moving! We launched registration and sponsorship opportunities today for our THIRD Hustle for Hope 5K!

We encourage families, NICUs, clinics, our industry friends, and anyone out there connected to the HIE community to join us in April to spread awareness for HIE, as April is International HIE Awareness Month. The virtual Hustle for Hope is a great way to bring our global community together and join in on helping us improve the quality of life for children and families impacted by HIE.

I'm happy to share that our first few Support Group meetings led by our social worker, Vanessa Zinke, LCSW, were well attended and well-received. We look forward to their continued success as another key tool of support.

I'm excited to share and reflect on the huge amount of love for our HIE community that families expressed on Valentine's Day, so be sure to view the videos below. When I reflect on the feelings of isolation and confusion in my own journey with HIE, and now seeing the sheer amount of connections and support our families give one another, is truly a dream realized.

But, we have much work to do! So, let's get going!

Most sincerely,

Betsy Pilon

Executive Director

Sponsorship Opportunities

Showing the HIE Community Love

Yesterday was such a beautiful day to see the interactions in our community, express how much the connections built in our support network have come to mean for the families we serve.

In particular, a group of HIE moms who all connected through Hope for HIE put together a Galentine's Video to showcase that even though they may not be physically nearby each other, they are just a call or text away!

Listen to Playlist

We announced during our Hope for the Holidays campaign that we were kicking off a partnership with the Songs of Love foundation.

Songs of Love partners with professional songwriters to take very special details about each child that may be facing serious illness or disability, and creating a custom song just for them!

Families are enjoying the special, customized songs for their children and you can listen, too, over on Spotify

All video support groups are led by Hope for HIE's social worker, Vanessa Zinke, LCSW, through Zoom, and require a registration that can be found on our full calendar of events.

Full Calendar of Events

Organizational Updates

Parental Perspectives in HIE highlighted at 13th Annual International Newborn Brain Conference

Hope for HIE was well represented at the recent Newborn Brain Society International Newborn Brain Conference.

Simran Bansal, Hope for HIE's intern, and Duke University senior had a poster presentation accepted for her work developing the upcoming book, "HIElights of Hope".

Betsy Pilon presented Parental Perspectives in HIE in a moderated discussion format with Monica Lemmon, MD, and a presentation on Mild HIE and Parent Perspectives.

Several of our Medical Advisory Board members were featured speakers, conference organizers, poster presenters and moderators. It was an exceptional event!

View Presentation

Newborn Brain Society Conference - Parent Perspectives in HIE.jpg

Newborn Brain Society Conference - Mild HIE Parental Perspectives.jpg

Seizure Action Plan Awareness Week

February 14-21 is Seizure Action Plan Awareness Week.

Nationwide, 470,000 children and teens have been diagnosed with epilepsy, and yet only a shocking 45% of pediatric patients have a seizure action plan. Having a plan in place can save lives.

Seizure Action Plans should be created collaboratively between the medical and educational teams, and anyone else involved in direct supervision of a child. Seizure Action Plans include what to do if a patient has a seizure, if rescue medication should be used and how, where it is stored, and who is responsible for enacting Seizure First Aid.

Learn More

Neonatal Seizure Registry Update

Hope for HIE is a parent organization partner in the NSR multi-center research project. Several landmark findings from the research have been published over the last year, including the evidence showing many babies are able to have anti-seizure medication discontinued prior to discharge from the NICU safely.

In addition, research has been analyzed on the impact of neonatal seizures on parent well-being. Out of this research, NSR has begun to create infographics and other resources for parents.