Just Say HIE

23/02/2023

WE'RE LOOKING FOR OUR NEXT PODCAST HOST!
Do you have experience with broadcasting or voice work? Are you a "people person" who loves learning more about and elevating people's stories?

Hope for HIE's Just Say HIE / podcast is looking for our new podcast host!

All training and equipment is provided, as well as some amazing Just Say HIE swag!

Learn more and apply at Tinyurl.com/justsayhiehost

24/01/2022

03/11/2021

NEW EPISODE!

Join us as we share the stories of Julie Makow and Margie Jones, two HIE moms, who connected through Hope for HIE on the road to kidney transplants for their children. With acute kidney injury and HIE, many children may have impacted kidney function. While Julie and Margie did not leave near each other, through Hope for HIE, they were able to complete the circle of support, for each other and new families. Learn more about some of the plot twists in life, and how tacos with a friend can transform pain into a kindred friendship.

https://anchor.fm/justsayhie/episodes/Connecting-Across-the-Miles---with-Julie-and-Margie-e19m9ql

Join us as we share the stories of Julie Makow and Margie Jones, two HIE moms, who connected through Hope for HIE on the road to kidney transplants for their children. With acute kidney injury and HIE, many children may have impacted kidney function. While Julie and Margie did not leave near each ot...

21/06/2021

BONUS EPISODE: Learn more about tongue, lip and cheek ties, who may benefit from surgical revision, what therapies are important for pre- and post-procedure for greatest success and who may or may not be a good candidate for this type of procedure.

https://anchor.fm/justsayhie/episodes/BONUS-EPISODE-Tongue--Lip--Cheek-Ties-e136s9t

Listen and subscribe on your favorite podcast platform!

Hope for HIE Foundation - Hypoxic Ischemic Encephalopathy

Join Medical Advisory Board members, Nancy Calamusa and Dr. Scott Siegel as they share about the impact of lip and tongue ties on speech, swallowing and feeding, when surgical intervention may be necessary, and why follow up therapies are critical for success. Tongue, lip and cheek ties are a hot to...

16/06/2021

Just Say HIE 's latest podcast episode is NOW AVAILABLE!

Meet Shiru, an attorney advocate, mother, wife and resident of Tanzania, and learn about her HIE journey, advocacy efforts and how she has built support.

To listen now, or to subscribe on your favorite podcast stream, visit https://www.hopeforhie.org/justsayhie

24/05/2021

BONUS EPISODE of our Just Say HIE podcast! Check out the bonus episode on our podcast page, where you subscribe to your favorite podcast, or by clicking on the link in our bio.

In this bonus episode, Dr. Bhooma Aravamuthan shares information about HIE, cerebral palsy and dystonia, including what medications and treatments are showing promise for HIE-acquired dystonia.

22/05/2021

The Hope Connections May newsletter is now available!

☀️ Update on outreach to over 60 NICUs
☀️ Meet Hope for HIE’s summer intern
☀️ Share your story in our new community project
☀️ Listen to the latest Just Say HIE podcast
☀️ Learn about the ONE Conference

Click below, or the link in our bio on Instagram to access:

https://conta.cc/3oAdraU

17/05/2021

We are excited to share our latest episode of our Just Say HIE podcast with Melanie Riggins, HIE mom, small business owner, and Hope for HIE Council of Advisors member.

Enjoy this clip, and the entire episode below, or wherever you subscribe to your favorite podcasts:
https://anchor.fm/justsayhie/episodes/Look-at-the-child--not-the-paper---with-Melanie-Riggins-e112ig2

"The SLP came in to the room where I just finished pumping for her. And she came in and she said "I was just telling everyone in my class, trust the patient, not the paper because the paper is not everything. The paper only tells a picture of a moment in time, it's not the entire story." And you know, I really hung onto that a lot in the NICU and those in those really lonely, isolating first days because I chose to just love my baby and believed in everything that she was showing me."

06/04/2021

06/04/2021

06/04/2021

BONUS EPISODE: HIE & NICU Nursing

We are excited to turn our Medical Advisory Board Educational Series events into bonus podcast episodes!

Originally airing March 19, 2021, the nursing professionals from our Medical Advisory Board shared their expertise and experiences, as well as where HIE care has been and where it is going. You won't want to miss this if you didn't catch it the first time around.

We are on Spotify, Amazon, Audible, and soon to be Apple!

Join the nursing professionals of Hope for HIE's multidisciplinary Medical Advisory Board to discuss NICU nursing and HIE, ways to improve care, communication and connection to advocate for HIE families and reduce disparities. Originally airing on Facebook LIVE! on March 19, 2021, we welcomed Kathi....

05/04/2021

We are excited to launch our first episode of the JUST SAY HIE podcast!

Learn more about Annie Goeller's involvement as a member of the Board of Directors and how she played a pivotal role in not only launching the inaugural HIE Awareness Month in 2016, but has continued to grow it throughout her tenure. Learn about her own journey with HIE and her daughter Emma, and what she hopes for the future for the HIE community.

Learn more about Annie Goeller's involvement in volunteering on Hope for HIE's Board of Directors, what she wants others to know about her daughter's journey with HIE, and how she pioneered launching global HIE Awareness Month in April, beginning in 2016.

01/04/2021

01/04/2021

It’s time for ! LIKE, SAVE, SHARE!
🎉🎉🎉🎉🎉

Look for story prompts all month long on social media, and be sure to use the hashtags and so we can track across social media.

The HIE journey is so complex. From a unique NICU experience to the “wait and see” in HIE, that can last for years, it’s time to get YOUR team together and help our community advocate for known unmet needs to improve care, communication and connection to ensure no family faces HIE alone.

Let’s do this!!!!