HIE Awareness Month is here Betsy!

We've officially kicked off the 2022 global HIE Awareness Month campaign, and it has been incredible to see our global community embrace this year's theme of "Hope Inspires" as a call-to-action.

Week one is themed HOPE INSPIRES ADVOCACY, and we are excited to share the many ways our families have embraced advocacy in the face of uncertainty, and difficulties with navigating complex systems.

Our advocacy key messages include:

Recognition of HIE, our community, our children, and the range of ways HIE can impact children and families
Naming the diagnosis. HIE is complex, and we've heard feedback from neonatologists and neurologists about why a diagnosis may not be concretely communicated to a family. We strongly advocate for early diagnosis discussions, and connection to peer support as a whole family best practice.
Equity in representation, messaging and elevation of our community in the NICU, PICU and beyond. Our families express that the lack of inclusive messaging in NICU for non-premature experiences can exacerbate feeling out of place, and a lack of connection to resources for their experience can further exacerbate their trauma.
We need more research in effectively preventing HIE, and the development of new therapeutics to improve the quality of life.

Get involved! Both our website of HIEawarenessmonth.com, and our social channels have ongoing, daily ideas to get you involved in advocacy and support!

Registration ends April 15th for the Hustle for Hope Virtual 5K! We have over 200+ participants registered, and look forward to you joining in! REGISTER NOW

Most sincerely,

Betsy Pilon

Executive Director

ADVOCACY WEEK EVENTS

HIE Awareness Month Events 2022 _Instagram Post_ _3_.png

Be sure to join in on our daily advocacy tasks! Today, we held our first ever "tag-a-thon" with our families tagging in the hospitals their children have received care in, asking them to share about HIE Awareness Month!

Full Calendar of Events

Organizational News

HIE Awareness Month blasted off at the NANT Conference

Dr. Monica Arroyo, Medical Advisory Board member, and Betsy Pilon, Executive Director, co-presented a session about HIE at the 12th annual National Association of Neonatal Therapists conference. It was an incredible time to connect with such passionate, talented and skilled NICU clinicians. NANT is led by Medical Advisory Board member Sue Ludwig, OTR/L, and it was very special to connect in person!

A Place to Play for All - Sam's Story of Advocacy

"There aren't any parks in our community that Bren can go to and play with his friends. I often had to carry him around and go down slides and climb up stairs with him. The closest park where he could use his wheelchair was 30 minutes away. I reached out to our city to see what the process would be to get an accessible playground in our community. They told me there was already a group starting something and when the next meeting was. I went and got on the board. I’m happy to say that through fundraising, lots of hours, and plenty of laughs and tears, there will be a park in the ground this fall that is inclusive to kiddos with all abilities!"

Educational offerings for clinicians in honor of HIE Awareness Month

In April, Synapse Care Solutions is offering several free live and pre-recorded educational courses and webinars for clinicians focusing on HIE, therapeutic hypothermia, and neonatal neurocritical care.

Thank you, Medical Advisory Board member, Kathi Randall, RN, MSN, NNP-BC, for your support and expertise!

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Collaboration with Kennedy Blair + Co. supports Hope for HIE for HIE Awareness Month

Kim Powers, founder and CEO of Kennedy Blair + Co, and HIE mom, has developed some beautiful and fragrant products launching this month, giving back 20% to Hope for HIE with their "The future is accessible" line, bringing a message of advocacy and inclusion!

Learn More