Planning for our 2022 family and professional conference is well under way! We’ll announce the location soon and are excited to share that Chantell Ferrin, a professional event marketer for Visa, joins our team as the volunteer Attendee Experience Lead. Here’s a warm introduction from Chantell, who will help us make the conference a memorable experience for our families:

“Hello! My name is Chantell Ferrin. I’m a mom of two amazing girls, wife/daughter/sister/friend/advocate and event marketer.

I was introduced to the world of epilepsy in December 2010, when my younger daughter, Taylor, received her diagnosis. As I’m sure many others can relate, our kids stories are detailed, complex, emotional and full of twists and turns. Ours began with 3-weeks of intubation in the ICU when Taylor was born. 50-100 seizures a day starting at 6-months old. Years worth of different medication cocktails and tests with our home neuro team. A second opinion at the Cleveland Clinic – which led to two epilepsy surgeries there at ages 4 and 6 years old (left frontal and left temporal with Dr. Bingaman). Significant developmental delays and an Autism Spectrum Disorder diagnosis. Fast forward to today, after what’s felt like eleven very long years, we’ve seen a vast improvement in Taylor’s quality of life with only a few seizures in bad month.
I know that even through those few brief sentences, many other families in this community can relate to the challenges, successes, ups, downs and plethora of emotions that come with the battle against pediatric epilepsy.
We have been fortunate and thankful to meet many other families facing similar challenges, as it has often been through our shared experiences that we have found advice, guidance, support, and strength to keep going.
In my professional work as a global event and experience marketer for top, global fintech and education brands, I’m passionate about enabling rich connections. And I’ve seen first-hand the impact, both professionally and personally, that can be made by surrounding yourself or others with “people who get it”, whatever the topic.
By joining the Brain Recovery Project as a volunteer for the pediatric epilepsy conference, I hope to give back to a community that is near and dear to my heart, and enable other families to connect and find support through shared experiences.”

Our last conference was out of this world! Check out what we did together:

Do you want to volunteer to help at the conference? Sign up here!

about the author

Monika Jones, JD, is our founder and executive director. Her first son, Henry, had a modified lateral hemispherotomy, revision surgery, then true anatomical hemispherectomy to stop seizures caused by total hemimegalencephaly. She is also the principal investigator of the Global Pediatric Epilepsy Surgery Registry, the only parent-reported data collection to understand the developmental trajectory after pediatric epilepsy surgery. You can read her research works at orcid.org/0000-0001-6086-3236.

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