Navigating an HIE diagnosis can be overwhelming, and having the right support at the right time can make all the difference. From the moment of diagnosis and throughout every stage of their journey, families need reliable information, compassionate guidance, and a strong support network—no matter the impact or outcome. To ensure this, we are committed to building a team that can provide the specialized support families need every step of the way.
And that’s why we’re excited to introduce you to Jennifer Schaefer! Jen brings over 17 years of experience as a Certified Social Worker in medical settings, including adult and pediatric care. Through her work, Jen is helping Hope for HIE create a more connected, supported, and empowered global community—one where every family, no matter where they are on their journey, has access to the resources and advocacy they deserve.
Missed the live stream Q&A? No worries. We took notes, and like any good partner, we are willing to share! Read our key takeaways below.
We already mentioned that Jen has 17 years of experience working as a certified social worker in adult and pediatric care, and we’d be remiss not to point out that, as part of this experience, she spent seven years working in a Level IV NICU—an environment many of our families have experienced firsthand.
That experience, in particular, not only equipped her with the tools and know-how to provide families with the support, guidance, and resources they needed through some of the most challenging moments of their lives, but as she explained throughout our live session, it also helped her recognize how crucial strong, continuous support is for families facing complex medical challenges. Now, she is ready to bring that same level of care and commitment to Hope for HIE, where she can continue to make a meaningful impact on our families.
Jen’s work at Hope for HIE focuses on providing direct, compassionate support to families, creating lasting connections, and strengthening the network of resources available to those affected by HIE.
Led by Jen, we host weekly video support groups for our HIE families via Zoom, offering a structured, non-judgmental space where families can connect, share experiences, and receive support. These groups focus on learning coping strategies, fostering community connections, and empowering families throughout their HIE journey. Many sessions also feature one or more of our Peer Support Mentors, who offer additional insight, personal experiences, and emotional support, helping families feel more understood and less alone.
You can register for these events below:
Alongside Allison Moise, Hope for HIE’s Peer Support Coordinator, Jen will continue to expand our Peer Support Mentorship Program by pairing families new to HIE, loss families, and others along the journey (including dads, adoptive and foster parents, extended family members, BIPOC families, and more) with our trained Peer Support Mentors. Families can receive either ongoing 1:1 mentorship or one-time, on-call support, ensuring they have the resources and connections they need at every step of their journey.
To request a mentor, use the forms below:
Jen will oversee the expansion of our HIE Hospital Ambassador Program beyond our pilot site at Seattle Children’s to additional medical facilities across the country (with a goal of global expansion for future cohorts). Trained to bridge the gap between hospitals and Hope for HIE, ambassadors act as a conduit of care and connection, ensuring families can access Hope for HIE’s tailored support, resources, and latest initiatives.
If you’re interested in applying to become an HIE Hospital Ambassador for the next cohort, fill out the form below:
Jen is committed to expanding Hope for HIE’s global outreach by building strong partnerships with hospitals and medical providers worldwide. In collaboration with these providers, she will work to address social determinants of health, ensuring that all families—regardless of their location or background—have access to our long-term support resources and the care they need throughout their journey.
One of Jen’s most valuable pieces of advice for families navigating an HIE diagnosis is to lean on the expertise of social workers. Social workers, whether through Hope for HIE, your medical facility, or even your child’s school, are uniquely positioned to understand the specific challenges families face and are trained to connect families with resources and services, helping them access everything from financial support to therapy options to local community services.
As Jen explains, social workers can be essential partners in your journey. Whether you request support from Jen through our HIE.Support network or connect with a social worker in your local area, consider tapping into this vital resource—they are here to help every step of the way.
To watch the full live stream of this Q&A, visit our YouTube channel below, or click on our Key Takeaways for an at-a-glance view of this session!
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