A Message from Betsy Pilon, Executive Director |
|
We're still riding the excitement from all of the connections we made during April's HIE Awareness Month.
Over 5,000 pieces of educational materials, translated into seven different languages, and 300 newly diagnosed family boxes have begun making their way out to 60 new NICUs and PICUs all around the world. You make this possible!
I had the opportunity to share the Hope for HIE story in many ways, with the most recent participating last week in the ICON, or Intensivecareonline.com, webinar continuing education series where I not only got to share how best to support families, but connect with overlap families who happen to work in NICUs and are HIE families themselves.
This month, we welcome our very first intern, Simran Bansal, who comes to us from Duke University, by way of a connection through Dr. Monica Lemmon, a member of our Medical Advisory Board. She's off to an incredible start already, and you can learn more about her below and the work she is helping with this summer. We are so fortunate to have her with us!
I'm looking forward to warmer weather here in Michigan, and the new ways we are continuing forward to connect more families, empowering them through education, and collaborating with researchers and clinicians as we continuously work together.
Thank you again for being such an important part of our community.
Most sincerely,
Betsy
|
|
|
|
Recent Events:
Upcoming Events:
|
|
MEET SIMRAN BANSAL, Hope for HIE Intern |
|
We are excited to introduce our greater HIE community to Hope for HIE's summer intern, Simran Bansal!
ABOUT SIMRAN
Simran is a rising senior at Duke University originally from Long Island, New York. At Duke, she created her own major entitled “Narratives of Health: Global Perspectives,” where she explores how health narratives can (a) help patients and family members cope with illness and (b) facilitate communication between patients/families and healthcare workers.
She is also involved in research at Dr. Monica Lemmon’s lab where she explores best communication practices among parents and providers in the context of the NICU.
"I am so excited to intern at Hope for HIE this summer where I will be combining my interests in storytelling and medicine to create various family-support resources."
COMMUNITY STORY PROJECT
As a part of her work this summer, she is coordinating a community project that will result in a published book of stories, poems, artwork and more from our HIE community. We are looking to showcase our diversity of voices and connections -- parents, extended family and friends, clinicians, researchers and more -- and hope you will consider participating!
If you are interested in contributing to this collective community project and sharing your story, please fill out the Google form linked below!
|
|
MAY IS MENTAL HEALTH AWARENESS MONTH |
|
Access to mental health support and resources is critically important for families who find themselves in the NICU and PICU. Parents whose children are admitted to the NICU or PICU have a 45-50% greater incidence of mental health disorders such as PTSD, Anxiety & Depression.
There also remains significant inequity for non-white families in the NICU, and non-preemie families in the NICU in their overall experience leading to feeling disconnected from support.
We're sharing information about parent mental health and HIE all month long across our social media platforms.
We also have a few different educational Q&As, fact sheets and more that you can use to learn more:
|
|
Just Say HIE Podcast Episode: Look at the Child, Not the Paper |
|
This month, we talked to Melanie Riggins, long time volunteer with Hope for HIE, and mom to Zoe and Maisie, about her experience with HIE, her NICU journey, and advice for moving through the different parts of the United States educational system.
Melanie is a talented graphic designer and owner of her own freelance company, Melanie Riggins Designs. In 2013, her daughter, Zoe, was born with HIE, started having seizures several hours later, and began her journey. In addition to Zoe, Melanie has a younger daughter, Maisie, and calls suburban Atlanta home.
Listen along as Melanie discusses her guiding mantra of how "looking at the child, not the paper" has helped her advocate to help meet Zoe's needs from the very beginning, build relationships with her medical team and educational teams, and through her advocacy learning how the various systems work, has helped her build teams that see Zoe for who she is and what her true potential is.
BONUS EPISODE: This month, we launched a bonus episode featuring Dr. Bhooma Aravamuthan and the information she shared during a Facebook LIVE! in March on HIE, Cerebral Palsy & Dystonia.
Be sure to subscribe to our podcast on iTunes, Amazon Music, Audible, Spotify, and more!
|
|
Hope for HIE Supports the ONE Conference: NICU Nurses, Register Now! |
|
This year, Hope for HIE is supporting the Virtual ONE Conference, an event
designed specifically for everyone who is committed to the care of baby brains, like our families with HIE.
In fact, you may see some familiar faces presenting who are leaders in this field and serve on our Medical Advisory Board.
This conference focuses on the professional nursing practice standards related to caring
for the injured or at-risk newborn brain, but there is something for everyone on the NICU
care team.
Sessions are evidence-based, but focus on practical application to everyday
life so you can implement something in your NICU when you go home.
Here’s some of what you can expect:
- General sessions each weekend (June 11, 12 and June 25, 26) featuring expert
- Speakers from around the world
- Hands-on workshops to dive deeper into NeuroNICU concepts
- Networking and live Q&A sessions throughout the conference to build community
- Lifetime access to the session recordings for viewing later (or again)
Learn more, or register, by clicking below.
|
|
|
|
Hope for HIE Amazon Storefront |
We are so excited to aggregate our favorite developmental products, recommended books for parents, caregivers and children, and more on our new Amazon Storefront.
A portion of every purchase goes right back to Hope for HIE!
|
|
|
|
 |
Check out our latest HOPE shirts and other swag! |
|
|
|
Our signature roast CUP OF HOPE supports the foundation, and employs people with disabilities. |
|
|
|
|
|
|
|
|
