December 2020 Issue
A Message from Betsy Pilon, Executive Director
Holiday Greetings!

2020 has brought unprecedented challenges to our community and world. We've lost several children in our community this year, we've all experienced a sense of loss for our normal in a global pandemic, and each of us has been impacted in immeasurable ways.

On the upside, Hope for HIE has had another incredible year. We've launched our unparalleled Medical Advisory Board of clinicians and professionals who are dedicated to helping us fulfill our mission to improve the quality of life for children and families affected by HIE through awareness, education and support.

We coordinated the fifth annual global HIE Awareness Month in April, and HIE Remembrance Day on April 20th, with a theme of Choose Hope. We've built more partnerships and collaborations. We've welcomed our first two Partners in Hope, Medtronic and Trexo Robotics. We've gotten involved in quality improvement projects for various facets of child neurology. We've hired an Executive Director to manage the opportunities we are engaged in and look to continue to grow the organization in new and exciting ways. We've welcomed David Ford as the new President of Hope for HIE's Board of Directors. We've grown to serve over 6,000 families worldwide. We've done all of this during a global pandemic. It's pretty incredible.

We are focused on bringing trauma-informed care principles to our support organization beginning in early 2021, in collaboration with several key members of our Medical Advisory Board. We are working with the Epilepsy Foundation to develop HIE-specific seizure identification and first-aid training. We are speaking at Grand Rounds, and moderating panel discussions at international conferences. We are connecting more families than ever to the critical support they need to feel empowered in their journeys with HIE. We have many exciting things to share in the beginning of 2021.

This journey is full of plot twists. I, myself, experienced one last week that you can click here to read more about. My biggest takeaway after a week of sleepless nights with many more forthcoming, is just how grateful I am for the peer-to-peer support in our organization, the dedicated professionals on our Medical Advisory Board, and our larger community of support, ensuring that no one faces HIE alone.

We are truly grateful to have you in our corner, and thank you for everything you have done to help us move our mission forward in 2020.

Here's to a less dramatic 2021, filled with more joy and peace for everyone.

Most sincerely,

100 for 100 Campaign a Success!
We are so grateful for everyone's generosity and support of our 100 for 100 campaign, and supporting us through the giving season! We smashed our goal this year, with incredibly moving stories that Annie Goeller, Vice President of Marketing and PR, shared through various testimonials, as well as individual fundraisers sharing their own stories directly with their connections.


We also held our annual HOPE FOR THE HOLIDAYS giveaways in our main parent group and our HIE loss group. Families could enter a chance to win a variety of items to improve the quality of life and access for their children and families -- anything from equipment that insurance typically doesn't cover, backpack carriers, Roomba vacuums, DoorDash gift cards, cozy blankets, and custom remembrance artwork for our loss families, and more. We were able to share some HOPE with over 75 families. We can do this due to the generosity of our community at large!
Medical Advisory Board Update
We are very excited to welcome Dr. Beth Robinson Swartz, pediatrician, recently retired from Henry Ford Health System in Detroit, Mich., to our Medical Advisory Board. She will be working with Hope for HIE to represent the clinical pediatrician experience, supporting families with developmental concerns and disabilities. Her full bio is below.
Beth Robinson Swartz, MD is a retired pediatrician, working for over 25 years for Henry Ford Health System. Dr. Swartz attended Boston University for medical school, did her Pediatric Residency at Children's Hospital of Michigan, and is a Board Certified Pediatrician through the American Board of Pediatrics. We are excited for her involvement in Hope for HIE!

Hope Goes LIVE! Managing Aging with Cerebral Palsy
As a part of our Medical Advisory Board Educational Series, we recently hosted Dr. Ed Hurvitz, discussing considerations for managing growth and aging with cerebral palsy.

Dr. Hurvitz discussed a thorough literature review and considerations for managing growth, body changes, social and emotional considerations and more as children transition into adulthood managing cerebral palsy and the many ways it can impact them.

To view this latest Q&A, click below.
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