Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy

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2020 Year in Review

December 31st, 2020

 

Dear Hope for HIE community,

2020 was an incredible year for our organization, despite the difficult year a global pandemic brought to each of us.
We grew to serve over 6,000 families worldwide, which brought upon wider recognition from our clinical partners, opening more doors to collaboration. We celebrated six years as a 501c3 organization, and have the following highlights we want to share:

HUSTLE FOR HOPE 5K
Who knew the world would switch to such a virtual format? We welcomed almost 200 participants in our first ever virtual 5K, saw many HIE kids and families participate through either running, walking or rolling along! One of the highlights was partnering with Trexo Robotics and seeing so many of our kids use their robotic gait trainer attachment to complete their 5K through the #trexowalkingclub. We are excited to kick off the 2021 Hustle. Look for details next month!

MEDICAL ADVISORY BOARD
We launched our 24-member strong multidisciplinary Medical Advisory Board in April, led by Jennifer Kegyes, Hope for HIE Board of Directors Professional Outreach Chair, consisting of the leading providers and researchers in HIE and the multitude of ways that HIE can impact a child. Our Educational Series has provided incredibly insightful and helpful information on a variety of topics. We are excited to continue this into 2021, with the generous support ofMedtronic.

You can access the educational series playlist here: https://www.youtube.com/playlist… 

HIE AWARENESS MONTH
We selected the theme of “Choose Hope” for our 2020 HIE Awareness Month in April and had unprecedented reach and participation. We spent time on April 20th honoring and remembering the legacies of our HIE children taken too soon on HIE Remembrance Day. We shared insights about the HIE family experience to thousands of clinicians and researchers through the Newborn Brain Society’s monthly webinar series, an interview on the American Academy of Neurology (AAN)’s Neurology Minute podcast, and one of Synapse Care Solutions nurse calls. Later in the year, we were asked to participate in a few different task forces including one on telehealth through the Child Neurology Foundation, and improving quality outcomes for child neurology through AAN. We look forward to this continued work together.

CONNECTING FAMILIES
We sadly had to postpone our biennial conference retreat due to COVID. We spent time instead working to connect our families, and hosting a fun night of comedy with Scott Long.

Our Medical Advisory Board has provided significant clarification on the latest impacts to our community and children at risk for severe disease course. We are so grateful that this year of all years we could lean into their expertise to guide our families.

Through our newly diagnosed family support box program, we distributed over 500 boxes to new families around the world.

ORGANIZATIONAL CHANGES
After two solid years of growth, outgrowing the 100% volunteer model, we made several changes to accommodate this growth moving forward. We welcomed Becky Detlef to the Board of Directors, thanked Lindsay Vanzandt for her several years of service to the board, appointed Betsy Pilon as the first Executive Director of the organization, and David Ford moved into the role of President on the board.

MAKING HIE EASIER TO UNDERSTAND
We developed several new resources, including an explainer video making it easier to understand the use of the Sarnat scale, MRI grading, and clinical outcome measurement. We shared educational information about subsequent diagnoses from HIE during respective awareness timeframes for autism, cerebral palsy, epilepsy, Infantile Spasms, and learning disabilities.

HOPE FOR THE HOLIDAYS
We completed our annual giving campaign during the holidays, including supporting over 75 families through our annual giveaway program. We beat our goal of our 100 fundraisers raising $100 in our community, with 107 total participants raising over $20,000 for Hope for HIE. We also launched several new items of swag including a hope rainbow shirt and our Cup of Hope signature coffee collaborating with Happy Cup Coffee Company.

MOVING INTO 2021
We are eager to continue moving our mission forward in the New Year. We have many exciting projects that we can’t wait to share more about! On behalf of our Board of Directors, I want to thank you for your incredible support… your time, your awareness, and your gifts to Hope for HIE. We wish you and your family a happy, healthy, and hopeful New Year.

Most sincerely,

Betsy Pilon
Executive Director
#HopeforHIE #YearinReview #HIE #HIEawareness #HypoxicIschemicEncephalopathy

 

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