Greetings!

This past month, I had a few opportunities to connect with different collectives, researchers and families. From these conversations, it is clear that interest in research to decrease the incidence of HIE and improve the quality of life for children and families, is becoming a larger global priority.

One of our Australian families was interviewed about their HIE experience, and illuminated new research emerging. Duke University's partner in cord blood research for HIE announced intention to move forward phase II and phase III trials. Dr. Janet Soul and others in the Neonatal Seizure Registry have additional published work on managing and preventing neonatal seizures in HIE.

November is Epilepsy Awareness Month. This year, it is quite personal for me, as my own son, Max, developed epilepsy last December at age 8. Epilepsy is easily the most common diagnosis that comes out of HIE, and across all outcomes. While epilepsy is relatively common - 1 in 26 - we know the burden and impact on our community is staggering.

We continue to educate our community on building proactive relationships with their child's medical team, know the signs of seizures (and for new families, Infantile Spasms), and encourage all to get seizure first aid trained. In the dark moments while Max had his first seizure, I recalled what I had learned from our community -- call 911, position Max to his side with his head on a pillow, take a recording of the seizure for his neurologist, and monitor vital signs. These steps empowered me during a harrowing time, and the support following from our community was unmatched -- from fellow HIE parents, to our medical team, to those on our Medical Advisory Board who reassured me that we were doing all we can.

We continue to build out our educational offerings for families and look forward to sharing more this month.

I'm excited to attend the American Epilepsy Society conference next month with new Board of Directors member, Amy Cutler. We will participate in the Rare Epilepsy Network activities and advocacy, and connect with researchers, clinicians and industry, all who are working to improve the lives of our families.

Lastly, SAVE THE DATE for Giving Tuesday, November 30, 2021. It's one of the biggest days for us as a nonprofit, and we once again qualify for Facebook's match, and giving is 100% fee-free. If you or your company are also interested in setting a match challenge, please reach out to us! We'd love to work with you to make every dollar stretch even further.

Most sincerely,

Betsy

We always love to see the creativity of our HIE community and the inclusive messaging that everyone uses and lives out to ensure all kids are able to enjoy!

Families partake in the teal pumpkin project, originally to ensure non-food items were available for children with allergies, but now expanded to ensure all children have access to non-food treats, like those unable to eat orally. It really makes for a wonderfully inclusive day for all!

Check out the video to the right to see everyone enjoying their Halloween.

One HIE dad, Joe Holland, was featured for his outstanding creativity in costume creation for his son, Ben.

(Yes, this actually works!)

The latest episode of our Just Say HIE podcast is LIVE, bringing the stories of Julie Makow and Margie Jones to our audience. Julie and Margie connected through Hope for HIE, when their children were facing acute kidney injury as an outcome from HIE, requiring transplantation.

AKI does not necessarily get as much awareness from HIE as other diagnoses, but it is definitely a prevalent issue. While Julie and Margie may live thousands of miles from each other, you'll hear how they connected online, supporting each other through their children's transplants, and also in person with tacos and hugs, when other plot twists happened along the way.

You won't want to miss this one. Our podcast is available on all major podcast platforms including Apple, Google, Amazon, Audible, Spotify, TuneIn, and more. Be sure to subscribe on your favorite platform.