January/February 2021 Issue
A Message from Betsy Pilon, Executive Director

We are excited for a New Year in 2021, moving forward our mission to improve the quality of life for children and families impacted by HIE through Awareness, Education and Support.

This last month included plenty of planning, some exciting opportunities to share more about our mission and more closely align with our medical partners in the NICU and post-discharge, and get ready to launch registration for our SECOND Hustle for Hope 5K!

I had the opportunity to speak at Cleveland Clinic's Neonatal Brain Club Grand Rounds this last month, and it was so incredible to connect with so many distinguished and passionate clinicians who are helping to improve care, communication and connection for our families.

We have also been asked to participate in some additional workgroups through Child Neurology Foundation, working more closely with child neurologists, community partners, and other organizations in the child neurology space to elevate our advocacy messages and work together. I look forward to sharing more as the year goes on with these initiatives.

We look forward to another strong year as we work together to bring people together in meaningful ways in 2021. We appreciate your continued commitment and support of our organization and we are eager to share more of what has been happening below.

Most sincerely,

Last year, it was a perfect time to kick off a virtual 5K, as that quickly became the norm. We enjoyed seeing over 200 community members take part all over the world. We got our feet wet with running such an event, and we are excited for a more streamlined process this year. David Ford, Board President, has been driving this effort, and we are excited to launch registration TODAY!

The Hustle for Hope 5K can be done anywhere, at anytime, by anyone! We encourage our community to safely get together with other people you may want to complete this with... at a park, in your neighborhood, or somewhere else that would be a great way to celebrate.

Register anytime between February 1st and May 15th by visiting https://runsignup.com/hustleforhope5k/signup. The race registration fee is $25. Each registrant will receive a finisher medal, race bib and car cling. Add a race shirt at sign up for an additional $15.

Race packets will be mailed out in three separate batches. The earlier you register, the sooner you will receive your race packet:
  • Register by March 15th and your race packet will be mailed by April 1st.
  • Register between March 16th and April 15th and your race packet will be mailed by May 1st.
  • Register after April 16th and your race packet will be mailed May 15th.

There are a couple of ways you can connect with other Hustle for Hope 5K participants and raise more money in support of Hope for HIE:
  • Join the official 2021 Hustle for Hope 5K Participant Group after you complete your registration.
  • Start a fundraising team during the registration process and invite your friends and family to join.
  • Setup an Individual fundraising page at registration and invite your friends and family to donate.
  • Take advantage of RunSignup's exclusive, industry-leading Facebook fundraiser integration.

Interested in joining our sponsors in supporting this event? Email David Ford for more information.
Thank you to Trexo Robotics, Bonfire, & David and Heidi Ford for your generous support!
Supporting Families into 2021
As our peer-to-peer support network has grown to serve over 6,000 families in the last year, we are working with members of our Board of Directors, Medical Advisory Board and Forum Moderators to develop training for our core group of 75 volunteers that coordinate our support network.

We are excited to bring training and trauma-informed care principles to our volunteers, develop a more robust New to HIE mentorship program, and more clearly articulate and educate families and the community on the benefits and scope of peer-to-peer support, connect families more meaningfully to community resources, and provide additional, meaningful ways to connect on and offline.

The workgroup will meet monthly, and we expect training to begin mid-year for our mentors and moderators.

Workgroup Members:
  • Adriana Salcido, MSW, Chair, Medical Advisory Board
  • Sue Hall, MD, Medical Advisory Board
  • Jennifer Kegyes, Board of Directors, Family & Professional Outreach Chair
  • Becky Detlef, Board of Directors, Loss Coordinator
  • Lindsay Vanzandt, Support Forum Administrator
  • Crystal Kostick, Support Forum Moderator
  • Tooba Rehman, MD, Support Forum Moderator
  • Betsy Pilon, Executive Director

Becky Detlef, Loss Coordinator and HIE loss parent, has been working to develop a more robust support system for our loss community, in conjunction with the Board of Directors.

As a part of this initiative, we wanted to develop a piece that would be a reminder that no family faces HIE alone, and especially in the wake of loss.

We are now shipping out forget-me-not mugs to all loss families, as a small way to remind them their children will always be remembered in our community.
Our Self-Care support group met this month to develop eVision Boards to set some realistic goals, talk through the challenges and unexpected joys that people have found during their HIE journey complicated by a global pandemic, and what doable things they could incorporate to focus on taking care of themselves in this next year. If you are interested in this presentation and vision board, be sure to visit our Self-Care for Parents group.

HOPE GOES LIVE! Mental Health After the NICU
This was a wonderfully timed kick-off, as we hosted Dr. Sue Hall on our Medical Advisory Board Educational Series discussing Mental Health After the NICU. We welcomed over 300 families who watched, commented, and engaged with us during the session to talk through seeking mental health support, peer-to-peer support, navigating relationships after the NICU, and working through grief and trauma.
Patient & Family Education Materials
One of the goals for 2021 is to create more robust, user-friendly, and inclusive educational materials that more easily help convey the HIE experience, through care, communication and connection with our medical partners.

We launched an initial graphic showing the unique HIE NICU experience, based on input from our community, and we are excited to build these out more, and across various languages. More to come!
Medical Advisory Board Update
We are excited to welcome Dr. Bhooma Aravamuthan, pediatric neurologist specializing in movement disorders, to our Medical Advisory Board. She will be working with Hope for HIE to bring more education to our community in the area of movement disorders, in particular dystonia, which has negative impacts on many children with HIE.

Dr. Aravamuthan is an Assistant Professor of Neurology and pediatric movement disorders specialist in the Cerebral Palsy Center at the Washington University School of Medicine. She completed her research doctorate at the University of Oxford in England, medical school and pediatrics residency at Washington University in St. Louis, and child neurology and movement disorders fellowships at Boston Children’s Hospital and Massachusetts General Hospital before returning to Wash U as faculty in 2018. She leads the Cerebral Palsy Research Network Committee on Dystonia Quality Improvement, is a founder and director of the Child Neurology Society Cerebral Palsy Special Interest Group, and is Vice Chair of the American Academy of Neurology Intellectual and Developmental Disabilities Section. Her translational research seeks to uncover what causes dystonia after neonatal brain injury and has received early career recognition from the Child Neurology Society and the American Neurological Association. Dr. Aravamuthan is committed to finding a cure for dystonia in people with cerebral palsy and is excited to pursue this agenda with the Hope for HIE community.
Talking Tone: Spasticity, Dystonia, Rigidity & Low Tone
Our families discuss many different topics, and we are excited to be able to bring those for clarity to our Medical Advisory Board.

Recently, there were some different interpretations of what different types of tone may mean for our families, so we reached out for more information to help educate our families.

Dr. Ed Hurvitz helped us more clearly disseminate information about tone to our families this month.

Read below!
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