Giving Tuesday is just around the corner, Betsy!
It has been a minute since we've sent our eNewsletter, and we've had so many wonderful things moving forward our mission, continued organizational growth, and securing resources to meet that.
Over the last few months, I have been evangelizing the lived experiences of our global HIE community across many in-person conferences and meetings to encourage further partnership, funding and awareness, highlighting the many ways we have invested in more comprehensive support services, onboarded a new employee (meet her below!), and even got families back together again at the Northeast Family Meet Up!
Diving into this work so deeply, connecting across the very different spaces of NICU support, therapeutic development, rare disease and condition-specific collectives is humbling, exciting, and sometimes even lonely! I attribute that nagging feeling of trying to find our place in this advocacy space, and the sometimes ensuing loneliness, as a reminder that we are doing things that have not been done before. And, just like families who opted into those initial cooling trials, we are pioneering.
HIE continues to be one of the most underfunded, yet significantly impacted populations. We are the second leading cause of neonatal mortality in the world, roughly six percentage points behind prematurity. I assure everyone who is taking the time to read this that we at Hope for HIE are working with every minute of the day, every single cent entrusted to us, to create a better world for our impacted children and families.
As always, we need more support and YOUR continued support! Our annual holiday appeal is underway, and officially kicks off on #GivingTuesday, November 29th. This year, we don't have a specific time for a social media match, but encourage people to become sustainers through our annual 100 for 100 campaign -- asking 100 supporters to set up a recurring gift - whether that is $5, $15 or $50 - either through Facebook (where fees continued to be waived, and every dollar up to $100 per donor will be matched, so every dollar goes to us!), or on our website.
With you, we are able to change the future for HIE children and families!
Most sincerely,
Betsy Pilon
Executive Director
| |
We also accept checks made out to Hope for HIE mailed to PO Box 250472, West Bloomfield, MI 48325 | |
Hope for the Holidays Gifting | | |
|
We are excited to partner once again with Samantha White, one of our HIE moms, and small business owner to bring our community this year's annual ornament.
These also make great gifts for therapists, teachers and more.
They are $12, including shipping, with a portion of the proceeds being donated back to Hope for HIE.
| |
|
Swag up your family, colleagues, neighbors and more!
Between our Bonfire shop with adult and kid apparel, and our CafePress shop with infant and toddler apparel, stickers, yard signs and more, we've got you covered! A portion of each sale goes to Hope for HIE!
| |
|
HIElights of Hope, our community anthology of stories across the spectrum of outcomes and the world, makes a GREAT gift for anyone in your family, clinical practice, or community.
You can buy individual copies, either in print or eBook, nearly anywhere in the world, and we also offer bulk discounts for 10+ copies.
| |
Deanna Bryan joins Hope for HIE as Program Manager
We are so excited to introduce you to Deanna Bryan, Program Manager. Deanna has a breadth of experience and expertise in managing programs, as well as spending many years as a teacher.
She has already pitched in to lead educational resources development to ensure our materials are accessible to as many as possible, will help build health literacy within our community, manage our many support and event programs, and bring consistency to our support material fulfillment processes.
| |
|
Connecting Across the Miles
Planes, trains and automobiles! We were so excited to host our first in-person event in over two years. HUGE THANKS to Samantha White and Nicole Yurchak for serving as co-hosts, bringing together eight families in the New England and East Coast regions for a wonderful meet up.
If you are interested in getting local families together in your area, Hope for HIE is pleased to support these events by providing logistical support, such as registration, venue negotiations, swag, and other event materials. Pick the place, pick the date and we'll help with the rest!
| |
|
Have Hope Will Travel : Advocating and Elevating the Lived Experiences of the HIE Community
Fall 2022 has been an incredible time to connect and reconnect in-person after the last couple of years of living in a 2D connection world.
Hope for HIE's Board of Directors was able to get together in Chicago, host a networking event with local neonatologists, pediatric neurologists, and OB/gyn providers to share organizational updates and learn from one another where we can continue to collaborate, in addition to planning the strategic goals for 2023 and beyond.
In addition, Betsy has traveled and presented to the following groups:
- Grand Rounds at Children's Hospital of the King's Daughters in Norfolk, VA with Partner in Hope, ReAlta
- Child Neurology Society presentations - Neonatal Special Interest Group with Dr. Andrea Pardo & Dr. Alexa Craig, Studying What Matters with Dr. Monica Lemmon, Dr. Renee Shellhaas & Dr. Adam Hartman, connecting in person with other members of Hope for HIE's Medical Advisory Board, the Neonatal Seizure Registry investigator team, local HIE families, and more!
- Family-Centered Care Taskforce webinar - elevating the lived experiences of full-term families
- International Neonatal Consortium panel on neonatal neurology therapeutic development with Dr. An Massaro, Dr. Nikki Robertson, Jill Baer, Dr. Sunny Juul ( co-PI on the HEAL study), Dr. Susan McCune (original PI on head cooling!)
- Portugese Neonatal Congress (happening tomorrow!)
| |
|
Let's Try This Again - Registration is NOW OPEN for the 2023 Mom Conference Retreat!
We are so excited to host in-person events once again, and will hold our biennial MomCon(ference) Retreat May 4-7, 2023 in St. Pete Beach, FL.
Registration is $100, plus the cost of hotel and travel. It includes some connection sessions, some meals and an atmosphere to connect! Moms across ALL outcomes are welcome to attend.
| |
| | | |
