June 2024

HOPE FOR HIE SHINES AROUND THE WORLD!

WOW! What a wonderful last few months for our organization! We've pulled off yet another successful global HIE awareness month filled with opportunities to connect, introduce new support programs, build new educational resources that advance health literacy for families, and share new research taking place!

We've been represented at global conferences through our advocacy volunteers -- in Germany, South Africa, Canada, Australia, the UK, Ireland, and the US!

We had an opportunity to host our annual Board of Directors in-person meeting at the Pediatric Academic Society meeting in Toronto where we hosted a booth, connected with our Partners in Hope and our Medical Advisory Board members, were proudly co-authors on four different academic/research posters, and plotted forward the next few years of strategic growth for "the little organization that could and is!"... although we really can't say we are "little" anymore!

One milestone that is always bittersweet is the amount of families we connect and support -- we've officially crossed the threshold to over 10,000 families worldwide, which in one way feels like a lot, and in many others, we know there are tens of thousands still without support worldwide, and more who enter our community every month with an unexpected plot twist for their family resulting in HIE.

In many ways, it's easy to feel behind in the context of advocacy, but in many ways we are blazing trails -- like our social work and child life services for ANY HIE family worldwide -- that continues to showcase the amazing team of staff, volunteers and families in our community.

THANK YOU to all who continue to support our organization!

Betsy

Betsy Pilon

Executive Director

Support Hope for HIE

Hustle for Hope by the Numbers

Our Hustle for Hope 5K events in April across 15 in-person events brought together nearly 1,300 participants and generated over $65,000 in donations directly benefitting and sustaining our comprehensive support programs and services!

143%

Growth in Hustle for Hope Registrations, year over year, jumping from 509 participants in 2023 to 1237 participants in 2024.

Pictured: The TOP FUNDRAISING TEAM - Team Hannah from the Sparks, NV event!!!!!!

59%

With immense gratitude, we report a 59% increase in donations year over year. This allows us to sustain and grow our comprehensive support programs and services for our global community including Newly Diagnosed Support Packages, Social Work, Child Life services, the SuperSibs program and our new SOAR program for children living with HIE ages 7-17!

Learn More

85%

We went from 7 in-person Hustle for Hope events in our previous year to having 15 take place. These in-person events accounted for more than 85% of registrations, emphasizing the power and importance of in-person connections in our community!

Keep an eye out in the Fall for Hustle Host applications!

NEW PROGRAM ALERT!

SOAR: Fostering Peer Connections & Self-Advocacy for Children Ages 7-17

Living with HIE

HIE kids need support for their journey, including connection to a community of peers. The SOAR program — Support, Ownership, Advocacy, Resilience — connects and empowers our HIE kids, ages 7-12 and 13-17, through peer connections, self-advocacy, support, and FUN as they grow into their lives with HIE.

Annie Gunning, Hope for HIE’s Child Life Specialist, will facilitate this program, include video age group sessions and interest/affinity groups, and work with various accessibility needs to maximize participation in the program and activities.

LEARN MORE: WATCH Q&A

SUPPORT OUR SUPER SIBS:

Get the July Drop, and Gift a Kit!

Our Super Sibs program, complete with recommended books and resources, connection activities to help bond with loved ones, and tools to express and navigate the complex emotions of being a Super Sib, is available to join throughout the year. Sign up in the month of June for the welcome kit and in time to receive our next drop in July!

Missed our April kit? Now's the perfect time to gift a kit to a friend, family member, or to your local NICU for support.

SHOP SUPER SIBS

EXPLORING HIE AND SLEEP: Q&A with Dr. Renee Shellhaas

Join Hope for HIE on Friday, June 28 at 12 PM ET for a live Q&A with Dr. Renee Shellhaas, Pediatric Neurologist and Researcher at Washington University in St. Louis, to explore the relationship between HIE and sleep.

She'll explore the prevalent sleep issues that present in children with HIE, the motivation behind her sleep survey, its design, and the types of questions it included, as well as immediate steps and interventions families can take to address sleep issues.

VISIT THE EVENT PAGE

Take Three: Awareness, Education, Support

Families often feel like they have to learn another language to understand a HIE diagnosis and what it may cause. We partner with our Medical Advisory Board and Certified Child Life Specialists to create resources, like monthly Q&As, building health literacy for our global community.

Q&A PLAYLISTS

Research is not just the responsibility of scientists and doctors. It is important that patients and families participate to whatever extent they are able. Learn more about the safety and efficacy of clinical trials, and stay up-to-date with our current and upcoming research by visiting our Clinical Trial Hub.

LEARN MORE

Whether you are a parent, an adult with HIE from a neonatal or pediatric-acquired cause, an extended family member or friend, a child growing up with HIE, or a SuperSib, we have peer support for you, and continue to build out our programs and services regularly as we grow as an organization.

GET SUPPORT