2022 was the biggest growth year yet for our “little organization that could and does”. I’m not sure we can say we are little anymore! This year, we were able to grow to serve thousands more families and accelerate advocacy and research — something we’ve been dreaming about for many years.
Because of the incredible community support from the greater HIE community, our families, our Board of Directors, Medical Advisory Board, and corporate Partners in Hope ReAlta Life Sciences and Medtronic, we’ve been able to meet the needs of our community, and take on important opportunities head on to change the trajectory of HIE children and families.
SUPPORT PROGRAM HIGHLIGHTS
The biggest investment we made this year was bringing aboard Vanessa Zinke, LCSW, to provide social worker support for our families, building out key programs like our trauma-trained Peer Support Mentor program — training 10 mentors for newly diagnosed families and 3 mentors for families new to HIE loss — and pairing mentors to mentees. Vanessa has also facilitated weekly video support groups for newly diagnosed families, loss families, and topic and demographic-based support for our community.
We made it easier for families to get connected into support by launching HIE.Support – a landing page with quick connects. We encourage all clinicians to share with HIE families.
We’ve also been working behind the scenes to get up and running in a pilot social services platform called Unite Us, through the generosity of Child Neurology Foundation. This platform allows our social worker to manage referrals, and better connect families to local resources.
We launched a birthday card program spearheaded by Hope for HIE volunteer (and mom!), Megan Culkin, ensuring families can get a little splash of sunshine during what sometimes can be a hard day.
We onboarded Deanna Bryan, program manager, to help bring consistency and elevate our support programs — onboarding a new support package fulfillment vendor, and building more accessible educational programming and resources. She has already added new educational resources to our website, including helpful key takeaway blogs and educational tidbits from our Q&As, and is assembling a translation committee to make our resources more accessible.
We held our annual Hope for the Holidays 10 Days of Giveaways, and was able to distribute over $10,000 in tools to make life just a little easier. We love doing this every year to share more joy and hope with our community of over 8,000 families.
COMMUNITY CONNECTION HIGHLIGHTS
We were able to bring people together for both the Hustle for Hope 5K — a program that has seen tremendous growth year over year! It was wonderful to see so many children’s hospitals and NICU teams join the ranks of participants. We held an in-person event in Michigan and hope to host a few regional events for this program in 2023!
We also welcomed back our regional retreat program and supported families coming together in New England for an overnight meet up, co-hosted by Hope for HIE volunteers Nicole Yurchak and Samantha White.
We are excited to finally host our biennial Mom Conference Retreat in beautiful St. Pete Beach, FL in May 2023!
Our Board of Directors was able to meet in person for the first time in a few years in Chicago, and we were able to host a reception networking with local neonatologists, pediatric neurologists, and OB/gyn researchers.
I’ve been on the road a lot this year, taking on many amazing speaking opportunities to tell the many stories of our community, elevate the unmet needs, and advocate for more attention to equity in representation in NICU, research into HIE itself and the many ways it manifests, and connect with so many of our Medical Advisory Board member in person for the first time!
HIE AWARENESS – REACHING NEW LEVELS
HIE Awareness Month’s theme of HOPE INSPIRES was a frenzy of storytelling, announcements, advocacy and community involvement, including our annual HIE Remembrance Day to show support and care for our loss community. We hosted educational Q&A’s, support groups, participated in several webinars promoting advocacy for inclusion in neonatal and neurological patient-centered care initiatives.
HIE Chef & Dad, Stefano Benso, hosted our first ever virtual accessible cooking class, and everyone who participated had such a fun time.
We kicked off the month with co-presenting at the National Association of Neonatal Therapists with Medical Advisory Board member, Dr. Monica Arroyo, in Cincinnati, Ohio, at the generous invitation from Medical Advisory Board member and NANT founder and President, Sue Ludwig.
We were so proud to launch our community book, HIElights of Hope, written and edited by our incredible intern (now turned super volunteer Program Assistant), Simran Bansal. If you haven’t gotten a copy, you can order anywhere in the world from Amazon.
ADVOCACY & RESEARCH
One of the largest growth areas for us in 2022 involved advocacy and research. Supporting families will always be at the cornerstone of who we are, and we are so grateful to have the resources to move forward the work being the global voice for the HIE community. It has been such an incredible year of learning as we get more active in this space, as we partner with both academic and industry-based research initiatives, all focused on improving the quality of life for children and families impacted by neonatal and pediatric-acquired HIE.
We announced our partnership with ReAlta Life Sciences, who is planning on beginning neonatal trials for a promising HIE therapeutic in 2023, and have been providing a patient-centered outcome framework to bring the lived experiences from our diverse community to the trial plans.
We were ecstatic to hear that Medical Advisory Board member Dr. Lina Chalak’s COOL PRIME multi-center research study for mild HIE has been funded by PCORI, and we are involved at the ground level to bring the lived experience of our families to this project as well.
We have had many discussions in the neonatal and neurological advocacy spaces for better inclusion of our community in family-centered care initiatives, equity in representation and messaging, and advocating for the expressed needs of our families to continue forward.
MOVING INTO 2023
We are eager to continue moving our mission forward in the New Year. We have many exciting projects that we can’t wait to share more about in January! We will also have a more comprehensive 2022 Impact Report released, so be on the lookout for that.
On behalf of our Board of Directors, I want to thank you for your incredible support… your time, your awareness, and your gifts to Hope for HIE.
We wish you and your family a happy, healthy, and hopeful New Year.
Most sincerely,
Betsy Pilon
Executive Director
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