Gladiator X Project

I want to share a brief update regarding my recent absence from social media. While I will share more details in November during National Epilepsy Awareness Month, we have been navigating a unique time since our recent golf scramble working to identify the source of Xavier’s right hip pain.

The mystery was resolved on July 31st, and following exceptional care Akron Children's hospital, we are adjusting to a new normal with a better understanding of his needs. Managing the complexities of a child with medical needs certainly keeps us on our toes, but our Village remains strong. We have been surrounded by love, and I am deeply grateful for everyone who stepped in to help.

Please rest assured that our mission continues. We received requests for SAMi Sami - The Sleep Activity Movement Monitor and Embrace Empatica monitors during this time, and every request has been granted. Gladiator X Project’s commitment to increasing awareness and education around SUDEP SUDEP Action through the distribution of monitoring devices remains unchanged.

Moving forward, we want to express our sincere gratitude to this year’s hole sponsors, as well as our coffee, donuts, food, b**r, water, soda, body armor and gift cart sponsors, for making our 4th annual golf scramble a success. Please take a moment to acknowledge these sponsors, who are vital to our work.

Thank you for your continued support, love, and dedication to Gladiator X Project ⚔️

Salvatore LaCause
Jill Yajnik
Katie Jerman Houston
Clean Harbors
Acme Fresh Market
giant eagle
Jubilee Donuts, Inc
Starbucks
Prospect Select Futures

Myriad
Blakemore, Meeker & Bowler Co., L.P.A.
Hoff & Leigh
Floor Coverings Int Cle South
Thrive Lawn & Plant Healthcare
The Pattie Group Inc.
Klein's Pharmacy
Explorer Pediatric Dentistry Hudson, Ohio
Flipfort
Thompson Electric, Inc. Ohio
Dr. Amanda Donnelly
merrellinsurance
AtNetPlus
steve nervo
Judie Ann
Janet Zwisler
Marita LaCause Gore

So much beauty in between this sunrise and sunset for the 4th annual GXP golf scramble on 7/11/26. So many pictures are rolling in … ones that may bring you tears of joy and others that will make you belly laugh. Good times, Amazing People, ….. for an organization that transpired from an ‘idea’ in 2018.

To everyone that showed up from outside donations, sponsors, volunteers throughout the week and the day of,the golfers …..Everyone ….TOGETHER we raised just over 27K! GXP will continue to promote education and awareness around SUDEP through the distribution of seizure alert devices.

Xavier woke the morning of the scramble with yet another generalized seizure but as he was coming to he mumbles “I want go hit a liquor bottle”. He had been patiently awaiting the scramble for quite some time. He showed up just as YOU showed up just as we at GXP show up for others. Thank YOU for bring apart of the project… Gladiator X Project⚔️

From sunrise to sunset …..all the LOVE in between….”You’ll have Days like This”🖤

Starbucks
Acme Fresh Market
giant eagle
Gionino's Pizzeria
Clean Harbors
Explorer Pediatric Dentistry Hudson, Ohio
Dr. Amanda Donnelly
AtNetPlus
Floor Coverings International
Floor Coverings International
merrellinsurance
Thrive Lawn & Plant Healthcare
Blakemore, Meeker & Bowler Co., L.P.A.
Flipfort
Prospect Select Futures
Hoff & Leigh
Myriad
The Pattie Group Inc.
Marita LaCause Gore
steve nervo
Janet Zwisler
Sami - The Sleep Activity Movement Monitor
Empatica
Brookledge Golf Club

A Repost from 4/8/25

The Beauty
Pure Innocence
Thru a child’s eyes

Charlotte, you were heavy on my mind the other day.
You are a FORCE!

, one ripple at a time and you continue to create waves. Waves of IMPACT!

April 7th (Charlotte Figi Day in Colorado)
Read from 4/7
Stories were shared
Our family story is on GXP Facebook as well as what led to us moving forward w/ Medical Ma*****na forever holds a special place in our 🖤

X will forever have a young mind d/t the significant impact on his cognition.

X’s story (a part of a medical J article & Natl. Webinar)
He has quality days & that is huge given his diagnosis’s
Seizures today-some weeks worse than others. He’s on 3 different blends of MM tincture, along w/ other meds

We are very passionate about others eyes being opened to the possibilities of MM for the pediatric population

It is not a cure

We do not see many characteristics of autism now.
Years ago it took both of us to put his shoes on. He used to be fearful to leave the house. His aggression and impulsiveness were unmanageable. There is so much MORE that the MM has helped with beyond his seizure burden.

Let’s OPEN our eyes to the possibilities for the usage for kiddos w/ other neuro-developmental diagnosis’s. They take ‘big time’ medication. It’s not an answer but it’s worth being an option.

Xavier is now 13. It will be exactly 6 yrs, the week of 4/21, that he’s been on his MM. We met w/ his medical team on 4/19/19 to move forward w/ MM. It was a day that shook me to the core. One of fear, hope and desperation.

WE have been given the opportunity to MEET and interact with OUR son once seizures, aggression & impulsivity calmed down. We still have HARD days w/ outbursts w/ Xavier. They are short and he is redirect able. We have been given time to learn better approaches as well. We get to work with him vs against.

Because of YOU Charlotte.....
Because of YOU Paige......
Our kiddo is living quality days .....
There’s a calm to this Storm
Thank YOU!

Please learn more about Charlotte Figi

A Force that has unveiled the beauty of a plant

Your energy
Your spirit
FOREVER a piece of so many

Embrace the SIMPLICITY of Life while truly living in the MOMENT of it all ⚔️

Yesterday… March 26th (International Epilepsy Awareness Day).

“March 26, known as Purple Day or World Epilepsy Day, was created in 2008 by then 9-year-old Cassidy Megan of Nova Scotia, Canada. Motivated by her own struggles with epilepsy, she aimed to raise global awareness, dispel myths, and assure those with the condition that they are not alone.” “The color purple was chosen because lavender is recognized as the international flower of epilepsy.”

In 2016 as I was trying to connect so many dots with Xavier It turned into a tangled web that never untangled. But Him living with an incurable progressive form of epilepsy (LGS) was NEVER a thought for I knew very little about epilepsy.

10 years later … Purple day … now resonates with me with meaning and growth.

We have been humbled and given GRACE.
Simple days are RICH in meaning.
Xs heart of gold teaches pure forgiveness
We learn FROM him
His world is not tainted with stigmas nor symbolism
He navigates life with feeling

Is it HARD? Yes, it is exhausting but it’s part of the journey. We are a family and we keep it REAL.

Beyond grateful for the quality of his days.

I’ve never asked WHY but rather HOW can we help.
GXP was a feeling and now it’s own 501(c)3
We will continue to help those on their journey. It will take time for insurance companies to understand, value and cover the cost of seizure alert devices. We will continue to help. We understand so many of the unpredictable costs that parallel a journey of such uncertainty.

Epilepsy is rarely talked about nor recognized.
As a community we can do better ⚔️



epilepsy

Join us on May 1, 2026

The ONE …. LIVE
(Event Center)

Special Guest

Comedian


A night filled with laughter & FUN while supporting

Get your tickets TODAY ✨

https://www.eventbrite.com/e/live-from-missing-falls-tickets-1984091379727?utm-campaign=social&utm-content=attendeeshare&utm-medium=discovery&utm-term=listing&utm-source=wsa&aff=ebdsshwebmobile

RARE Disease Day 2/28/26

70% OF GENETIC RARE DISEASES START IN CHILDHOOD

Rare Disease Day
Rare Epilepsy Syndromes

Thank you for the explanations (pics)

RARE DISEASES CURRENTLY AFFECT 5% OFTHE WORLDWIDE POPULATION



Every year on the last day of February (either the 28 or 29
February-the rarest day! *), the world comes together to raise awareness for the 300 million people living with a rare disease.

Since 2008, Rare Disease Day has grown into a truly global movement. It brings together patients, families, caregivers, researchers, clinicians and advocates — a community standing side by side.

Rare Disease Day matters because too often people living with rare diseases are unseen and unheard. This day shines a light on them, their stories, and their urgent need for equity in healthcare and social opportunities.
You can be join this movement by spreading awareness, illuminating landmarks, sharing personal experiences, calling on policymakers, and starting conversations that matter!

Coming to a close with…..
Seizure Action Plan Awareness Week

Seizures are unpredictable
Having a plan in place …. Lifesaving

The 3rd pic is a small piece of Xavier’s Seizure Action Plan
inc follows the plan in place every time which not only keeps Xavier safe but allows them to learn more about his epilepsy and seizures. The team remains calm. We, his parents as well as his medical team do NOT want his emergency medication administered every time. Xavier has proven to show resistance to multiple medications. We do NOT want him to develop a resistance to this one. The plan is individualized for Xavier’s needs as it should be for anyone living with epilepsy.

Establish your plan today!

has covered the expense of the costly emergency medication for families. It’s an immediate need for those living with epilepsy.

First 2 pics & info. below copied from:

It’s Seizure Action Plan Awareness Week!

We can’t teach everyone we know seizure first aid, but even if we could, not all seizures are the same! That’s where a Seizure Action Plan comes in. It’s a customizable document that makes it easy for someone to help you during a seizure, even if it’s their first time. You can include information like when you need emergency medical treatment, how to use your rescue medication if you have one, and how to help you recover after the seizure ends.

Visit the Seizure Action Plan Coalition website, where you can find our fillable PDF SAP template and download for free, link in comments!