February 2023

Betsy,

February is a very busy time for our organization and community as we are preparing several community events and ways to get involved with Hope for HIE -- from the Hustle for Hope 5K (your way! - virtual or in-person! team or individual!) to April's global HIE Awareness Month to returning to in-person events with our upcoming HIE Mom Conference Retreat May 4-7, 2023.

I also just returned from attending and presenting to the International Newborn Brain Conference, continuing our advocacy and collaboration to bring the lived experiences of the HIE community to research and clinical care with the long term aim to decrease the incidence and impact of HIE. Through two sessions and three posters, the Hope for HIE community was showcased in how we collaborate with researchers to look at important topics. You can access those in the news item below.

January was a tough one for our global community. Loss is the most devastating outcome that we see with HIE, and it has felt relentless in January, losing several children who we've watched grow up and those who were lost just days into their HIE journey.

Our support services are here for families as they process their grief, and we encourage families to reach out to us. As mentioned in the January newsletter, we recently onboarded Certified Child Life Specialist, Annie Gunning, who is available to help parents, siblings and extended family through bereavement with meaningful consults and activities that are age-appropriate. You can reach her at annieg@hopeforhie.org.

We've been fortunate to onboard two additional staff members, Lorraine Willias, LMSW, RN, who will be leading our social work programming, and Rachel Ramnarine, Winter Communication Intern. In addition, I'm excited to welcome Dr. Danielle Barber to our Board of Directors. Read more about these wonderful additions down in our HIElights.

As we move forward, we will continue to share out the best ways to tap into our support services, ways to be involved in research and care, and more stories from our amazing families and how we can continue to move forward our mission together.

Most sincerely,

Betsy Pilon

Executive Director

Sponsorship Information

All video support groups are led by Hope for HIE's licensed social worker through Zoom, and require a registration that can be found on our full calendar of events.

Full Calendar of Events

Organizational HIElights

HIE Community showcases collaborations to move forward research at INBBC

Over the last two years, we have been working closer with many of our Medical Advisory Board members, and other researchers in neonatology and pediatric neurology. Several of these opportunities continue to evolve, and we were so proud to have THREE posters using that collaboration data to move forward what matters most to the community, and to help others further understand the lived experiences of our children and families.

Review the posters, photos and more below:

Learn More

Danielle Guez Barber, MD, PhD joins Hope for HIE Board of Directors

We are excited to welcome Dr. Danielle Guez Barber, accomplished pediatric neurologist, researcher and HIE mom, to our governing Board of Directors.

Danielle has been serving on our Medical Advisory Board since 2020, and is an attending physician in Child Neurology and a Research Associate at the Children’s Hospital of Philadelphia.

Since 2019, she has been focusing her work both in the clinic and in the laboratory on children with HIE. In the lab, Dr. Barber uses a mouse model to understand the role of microglia (brain immune cells) in the sex differences seen after HIE, with particular attention to the cognitive and affective challenges. Dr. Barber is also the Mom of a bright, funny and very hard-working girl who had HIE at birth.

Learn More

Welcoming Lorraine Willias, LMSW, RN & Rachel Ramnarine to Hope for HIE

We are excited to welcome Lorraine Willias, LMSW, RN to Hope for HIE to serve as our new Social Worker, expanding the role created by Vanessa Zinke, LCSW, this last year.

Lorraine brings her clinical experience as a registered nurse with her passion for social work to this role, with previous experience working with children and families, building programs, and connecting to support.

Lorraine will be taking on management of support programming, expanding our referral outreach, and starting new programs to better connect families from diagnosis through their journey.

Contact Lorraine

Rachel Ramnarine is joining Hope for HIE for a winter internship. Rachel will be working on HIE Awareness Month initiatives, such as the social media campaign, HIE Awareness Ambassador program, and related promotion.

She is a senior at the University of Miami in Florida, majoring in Communication, with a minor in Health Communication, set to graduate this May.

She brings impressive previous internship experience in the bioscience industry.

Registration Moves Forward for the 2023 Mom Conference Retreat

We are so excited to host in-person events once again, and will hold our biennial MomCon(ference) Retreat May 4-7, 2023 in St. Pete Beach, FL.

Registration is $100, plus the cost of hotel and travel. It includes connection sessions, some meals and an atmosphere to connect! Moms across ALL outcomes are welcome to attend.