April/May 2020 Issue

HIE Awareness Month Wrap-Up

We finished up another successful and engaging HIE Awareness Month, our SIXTH annual. Special shout out to Annie Goeller, Hope for HIE's Vice President of PR & Marketing, who designed and coordinated over 100 posts on our social media sites, including the announcement of our Medical Advisory Board led by Jennifer Kegyes CCC-SLP, and Hope for HIE Vice President of Family & Professional Outreach , and included their thoughts on the theme of "Choose Hope". We once again hosted an online Wave of Light on HIE Remembrance Day, April 20th, to honor our loss families. Loss mom and admin, Becky Detlef, launched monthly Zoom support sessions for our loss families, which have been very well received. We were excited to participate in the first Newborn Brain Society webinar series, was invited to share about HIE Awareness Month with a group of neonatal nurses through Synapse Care Solutions , and was interviewed for a Neurology Minute podcast through the American Academy of Neurology. We always enjoy seeing how our families share what is most meaningful to them in their journey with HIE during this month, and see the incredible Enjoy this collage coordinated by one of our incredible HIE moms, Lindsey Garrett, of some of our beautiful and incredible kids!

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Challenges with COVID-19 & Virtual Connections

Like other organizations, Hope for HIE has been impacted by COVID-19 in different ways. Our families are struggling with shifting to online therapies, online schooling, or an absence of therapies and appointments that are important. For newly diagnosed families, different visitor restrictions are in place and impacting parent mental health more than usual. We are attuned to these changes and continuing to facilitate support through our community. We made the decision to postpone our biennial moms retreat, that was to be held April 30 - May 3 in Florida, until October. Our registered attendees gathered virtually this weekend, shared their ups and downs, and closed with a beautiful poem shared by attendee Susanne Atwell-Keister by Rudyard Kipling that we hope you find inspiring as well during this time. Despite the stress most are feeling during this time, we successfully launched our Hustle for Hope Virtual 5K with almost 200 participants so far! David Ford, Hope for HIE's Vice President of Fundraising and Advocacy, has been a champion of this project and done a phenomenal job launching this inaugural event. There is still time to participate and register! Hope for HIE was founded as a global, virtual community of support. We are experts in community building online, and will continue to best serve our community during this time to bring people together and meet their needs of support.

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Hope Goes LIVE! Q&A with Nancy Calamusa

In early April, we had a chance to sit down with Nancy Calamusa, CCC-SLP, whose expertise is in neurological-based neonatal and pediatric feeding and swallowing issues. Nancy serves on Hope for HIE's Medical Advisory Board and is the owner of New Jersey Pediatric Feeding Associates.

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Partners in Hope Program Launches

We have had a significant increase in interest from industry partners who manufacture equipment, therapeutic interventions, and medications that make a positive impact on our community. In response to finding ways to engage their support, we are launching our Partners in Hope program to help sustain the mission of Hope for HIE. To learn more, or to sign up as a partner, contact David Ford, Vice President, Advocacy & Fundraising, below.

Contact David Ford

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