November 2020 Issue
Hope for the Holidays: Giving Tuesday - December 1, 2020
Mid-November kicks off our Hope for the Holidays campaign. We love sharing stories of gratitude and gearing up for how people can GIVE HOPE on #GivingTuesday. This year, we will once again go for matching donations on Tuesday, December 1, 2020 through Facebook donations (100% fee-free) and on our website at

These efforts help us provide support services to our families, including our Hope for the Holidays Giveaways where we give away upwards of $10,000 worth of equipment that insurance may not cover, as well as items that make life a little easier on our families, and in particular during the pandemic.

We are kicking off our 100 for 100 Campaign today that is solely on Facebook where we ask 100 community members to start a fundraiser to raise $100 or more for Hope for HIE's mission. Each participant will receive a special thank you in January, at the close of the campaign.

When you GIVE HOPE:

  • $25 Sends a newly diagnosed family a support package (we have sent over 500 this last year alone).
  • $50 Provides 10 NICUs with referral materials .
  • $100 Sends a family facing the loss of their HIE child a personalized support package.
  • $500 Provides the ability to participate in and attend advocacy events and medical conferences to network and move forward research and programs to improve the quality of life for our families.
  • $1,000 Provides the sustainability to hire an Executive Director to move forward our mission.
Improving Quality of Care in Child Neurology
We are excited to share that Betsy Pilon, current foundation President, has been selected to serve on American Academy of Neurology (AAN)'s Standing Child Neurology Quality Measurement Work Group.

This group is convening to review guidelines, measures, and additional published literature, and develop quality measures to address desired outcomes and gaps in care.

We are excited to bring the voice of the HIE community to this effort and continue to move forward our mission to improve the quality of life for our HIE children and families through Awareness, Education and Support.
Medical Advisory Board Update:
Addressing Sleep Issues with HIE
Welcome Dr. Carosella! We are excited to welcome a new member to our Medical Advisory Board in the area of neurologically-based sleep issues, a huge need to address in our community.

Please join us in welcoming Dr. Carosella to the Hope for HIE community.

Christopher Carosella, M.D., is a pediatric neurologist with expertise in epilepsy and sleep medicine. Dr. Carosella earned his medical degree from the Drexel University College of Medicine in Philadelphia. He completed his pediatrics and child neurology residency, followed by a fellowship in epilepsy at the Cincinnati Children’s Hospital Medical Center. He then completed an additional fellowship in sleep medicine at The Johns Hopkins Hospital.

He is currently an Assistant Professor of Neurology at Johns Hopkins where he sees patients for both epilepsy and sleep disorders. Dr. Carosella’s research interests include the overlap of sleep disorders in epilepsy and other neurologic conditions, as well as vagus nerve stimulator-associated sleep disordered breathing.
November is Epilepsy Awareness Month
Epilepsy is one of the more common diagnoses to come from HIE, and there are certain types of seizure disorders that HIE children are more prone to developing.

  • Many babies and children experience seizures at the onset of HIE
  • HIE is one of the leading causes of Infantile Spasms, a type of epilepsy. If not treated aggressively, IS can cause developmental regression.
  • IS most commonly develops in the first 4-8 months post-injury
  • Once seizures are controlled post-injury, the likelihood of developing a form of epilepsy ranges from 9% to 33% in children who experienced seizures at time of injury, and five times the risk of developing epilepsy, according to current research.
  • Projects like the Neonatal Seizure Registry, that Hope for HIE participates in, are working on long term studies to give more accurate information, and looking at treatment protocols.
  • Other rare forms of epilepsy that are more prevalent in the HIE community includes Lennox-Gastaut Syndrome (LGS) and Electrical status epilepticus in sleep (ESES).
  • Common developmental times for children to develop epilepsy tend to be around developmental cognitive leaps (ages 4-8), and puberty
  • There are many treatment options, including medications and surgery, and what works for one person, may not work for another.
  • Hope for HIE is a part of several collaborative groups addressing the various seizure types that are common with HIE including the Rare Epilepsy Network, Infantile Spasms Action Network, and the Neonatal Seizure Registry project.
  • Hope for HIE is also partnering with the Epilepsy Foundation of America to develop HIE-specific seizure first aid and informational training.

We've designed some social media graphics that can be widely shared on the website below.
Hope Goes LIVE! Neuropsychological Development
As a part of our Medical Advisory Board Educational Series, we recently hosted Dr. Seth Warshausky, discussing neuropsychological development. Our community was very eager to learn more about the field of neuropsychology, and how working with a neuropsychologist can bridge medical and educational services to best support children with HIE, who may be diagnosed with learning, attention and behavioral differences.

Dr. Warschausky discussed his clinical interests in early identification, his work on accurate assessments for children with motor disabilities, and how adaptive technology resources can help students receive the accommodations and supports they need to be successful in a learning environment, and at home.

To view this latest Q&A, click below.
Shop HOPE for the Holidays!
Check out our latest HOPE shirts that make excellent holiday gifts!
Our signature roast CUP OF HOPE supports the foundation, and employs people with disabilities.
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