A Message from Betsy Pilon, Executive Director |
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Our summer flew by and it was incredible to see our families making the most of this shifted world, finding new ways to explore and make memories, enhancing the quality of life for their children and families.I invite you to read more about the Pompa family and their summer adventures below.
After a restorative summer, we are now digging in at full tilt with additional projects to move forward our mission including new family support programs, volunteer and leadership engagement, educational webinars, advocacy opportunities and more.
COVID continues to impact our community in various ways. We made the difficult but necessary decision to cancel the biennial moms retreat and look towards 2023 for the next one, with high hope that we may be able to schedule some in-person events next year on a smaller scale.
As the seasons change, we want to send a hearty THANK YOU to Jennifer Kegyes for her impeccable service to our Board of Directors these last few years as she transitions off the board. You can read more about Jennifer's accomplishments, and her predecessor below.
I look forward to connecting further with many in our community as we work to record more podcast episodes, provide continued education through our Medical Advisory Board educational series and our website, and collaborate across the ecosystem of those who are aligned with our mission, with special note to our incredible Partners in Hope participants.
Most sincerely,
Betsy
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NICU Awareness Month - Improving Equity for HIE Families |
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September was NICU awareness month. We partnered with several NICU organizations to showcase the complexities and impact a NICU stay has on families.
For Hope for HIE, we have been advocating for many years for more inclusive language from the full neonatal community, as over 50% of NICU admissions are full term babies. Our community continually shares that misperceptions around NICU being synonymous with prematurity exacerbated their trauma in the NICU.
We are so grateful that project partner Project Sweet Peas gave an extra emphasis this year to bringing all NICU support organizations together, and emphasized inclusive language!
We partnered with Qeepsake, an online memory app, to talk about the full term NICU experience in an Instagram LIVE! event at the end of the month to wrap up NICU awareness month.
We were also able to celebrate and give back to NICU nurses on Neonatal Nurses Day -- spreading some warm (or iced!) hugs with a Starbucks giveaway to keep them fueled. We were able to give over 100 nurses a little fuel from Hope for HIE!
We want to thank ALL of our NICU partners and staff for all the work you do to ensure equity for our HIE families and all the care, communication and connection you give!
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Board of Directors Changes |
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After her tenure of serving her two year term, we want to express our most sincerest thanks to Jennifer Kegyes for her dedicated service to our Board of DIrectors.
During her tenure, Jennifer created extensive changes in our organization by implementing the Newly Diagnosed Family Box program (you may remember seeing a photo of a stuffing party she had taking over her living room when they first got up and running), developing and launching the Medical Advisory Board, which she has co-chaired since its inception, and served on the planning committee for our biennial mega retreat. She also helped expand our loss outreach programs, in conjunction with Becky Detlef who also serves on our board.
She has long volunteered supporting Hope for HIE on various retreat planning committees, moderating some of our online support groups, and making connections in our community to best support families.
Jennifer will remain an active member on our Medical Advisory Board, and we are so grateful for all she contributes to move our mission forward.
We are excited to welcome Amy Cutler to the Board of Directors for her upcoming two year term. Amy was confirmed by the board in September, and will be taking on co-chair responsibilities of the Medical Advisory Board.
Amy is a licensed pediatric occupational therapist, and no stranger to our organization. Her first daughter, Hannah, was born with HIE, and she has been a very active member of our organization, and in particular in the Chicago area, for many years. We are excited to have such talented community members help us grow, and have the continuity between Jennifer and Amy to continue growing forward.
Welcome Amy!
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Hope for HIE in Seminars on Fetal & Neonatal Medicine |
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In conjunction with the Newborn Brain Society Guidelines and Publications Committee, Annie Goeller and Betsy Pilon co-authored a chapter with Drs. Alexa Craig and Monica Lemmon titled "Supporting families in their child's journey with neonatal encephalopathy and therapeutic hypothermia" that has been published in Seminars on Fetal & Neonatal Medicine.
We are excited to see this hard work come to fruition, moving forward our advocacy to improve care, communication and connection and look through the lens of trauma-informed care for families to come impacted by HIE.
Congratulations to everyone involved in this process, as well as the collaboration to get there!
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We have been collaborating with the COHESION study team in Ireland and invite anyone in our community to take the survey to impact focusing on the most important outcomes for treatment of HIE, which is a subset of neonatal encephalopathy.
When research studies looking at treatments measure the same outcomes, the results of the studies can be compared.
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Join our Partners in Hope program |
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We are so grateful to our current Partners in Hope who are investing in the future of our organization:
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Learn more about partnership and sponsorship opportunities to accelerate Hope for HIE's mission by contacting David Ford: |
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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!
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Check out our latest HOPE shirts and other swag! |
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Our signature roast CUP OF HOPE supports the foundation, and employs people with disabilities. |
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