November 2019 Issue
Infantile Spasms Awareness Grant Awarded to Hope for HIE
Hope for HIE was recently awarded a $5,000 Infantile Spasms Awareness Grant from the Child Neurology Foundation.

HIE is a leading cause of Infantile Spasms, a potentially catastrophic type of seizure disorder.

Through the grant, Hope for HIE is working with two leading pediatric neurologists through UCSF, Drs. Hannah Glass and Adam Numis, to develop and distribute patient and provider educational materials, awareness graphics, and hosting three Facebook LIVE! Q&A events with the neurologists for the greater community during Infantile Spasms Awareness Week, December 1-7, 2019.

Facebook LIVE! Q&A Events

Monday, December 2 @ 3 pm EST

Tuesday, December 3, 2019 @ 3 pm EST

Thursday, December 5, 2019 @ 11:30 am EST
Support Hope for HIE on #GivingTuesday!
Join us for one big day of giving! Hope for HIE is moving forward our mission in the most amazing ways. We are collaborating with pediatric neurologists and researchers, launching new support initiatives with our families, and working diligently to ensure no family faces HIE alone.

We can't do it without your help. On GivingTuesday, join us on Facebook and our Website to GIVE HOPE this holiday season!

If your employer matches gifts, please select Hope for HIE as the matching beneficiary.

For more information, contact admin@hopeforhie.org.
New Family Support Packages Launch
New families will now be sent a welcome package from Hope for HIE with helpful items for parents and children.

Our first packages have been rolling out and the feedback has been incredible:

"It was SUCH a wonderful surprise! Thank you SO VERY MUCH for our welcome box! Everything inside is so thoughtful and we greatly appreciate it! "
- Meg, New HIE Mom

To request for a new family within three months of diagnosis, or for your NICU, click the link below.
Jennifer Kegyes Joins Hope for HIE's Board of Directors
Hope for HIE's Board of Directors is excited to announce Jennifer Kegyes is joining the board of the foundation.

In her role, she will be responsible for overseeing the foundation's family outreach initiatives, including the online and offline support activities.

Jennifer has been a member of Hope for HIE's parent support network since shortly after the birth of her daughter in 2014. She has been a volunteer with the organization in many capacities including as a new parent mentor, on the planning committee for Hope for HIE's retreats, and as a moderator of some of Hope for HIE's online forums.

She is also a licensed speech pathologist who specializes in voice work. She has a deep understanding of provider and family relationships, as a parent and practitioner, which she will bring to the role when helping our families learn to positively advocate for their children.

To contact Jennifer with any questions regarding outreach initiatives, please email her at jenniferk@hopeforhie.org .
TELL US YOUR STORY!
We regularly feature our families and want to feature yours,
or your practice with HIE patients and families.
Reach out to us and let us know how Hope for HIE has impacted YOU.
Sign up now for Hope by the Beach 2020!
Hope by the Beach 2020: Conference Retreat for HIE Moms
Sign-ups are being accepted for the 2020 moms retreat to be held April 30 - May 3, 2020!

Registration is $100 and covers some food, activities, retreat materials and swag. A block of hotel rooms with a special rate have been secured for paid registrants.

To learn more, visit Hope for HIE's main parent forum's event.
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