Creld1 Warriors

02/06/2026

💥Edie💥

🦸🏼‍♀️Meet our Warrior of the Week, 2-year old Edie Joy! She lives in Brimbin, Australia with her loving family.

🧠 Edie faces relentless seizures and has endured a very tough medical battle in her short few years of life. She is so very brave and resilient.

🎀 She the most adorable little girl that loves Peppa Pig and absolutely adores her sisters!

➡️ Visit www.creld1.com to donate and learn more about this genetic disorder.

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(Sorry for the missed Warrior of the Weeks! My own Warrior, Jace, was struggling these past few weeks. That’s just the reality of Creld1 💜)

18/05/2026

This National Epilepsy Week, we stand with the millions of people living with epilepsy and help break the stigma through awareness, understanding, and supporting research. 💜

Adam Clatworthy and our gorgeous Alfie representing CRELD1 Warriors 💜💜

💜💜💜National Epilepsy Week 2026 💜💜💜

This year, alongside other epilepsy charities for National Epilepsy Week, we’re celebrating the richness of our community, bringing supporters from across the UK together to show the power of unity.

Young Epilepsy
SUDEP Action: Making every epilepsy death count
Epilepsy Research Institute
Matthew's Friends Ketogenic Therapies charity
HOPE for Epilepsy
Epilepsy Action
Dravet Syndrome UK
UK Infantile Spasms Trust- UKIST
Creld1 Warriors
OACS - Epilepsy Medications Pregnancy Valproate Autism
The Meath Epilepsy Charity
OACS - Epilepsy Medications Pregnancy Valproate Autism

15/04/2026

💥Colton💥

🦸🏼Meet our Warrior of the Week, 4-year old Colton. He lives with his adoring parents & siblings in Minnesota.

🏥 Colton was born at 35 weeks after a complicated pregnancy. He spent 30 days in the NICU with respiratory and feeding distress. You could say he has been a super warrior since the womb!

🧠 This warrior continues to battle countless challenges, and he really has paved the way for the creld1 community. He was the first creld1 patient to receive IVIG, which has since helped multiple other children.

🫶🏻 He is the most brave & resilient boy, who is loved beyond measure!

➡️ Visit www.creld1.com to donate & to learn more about creld1.

31/03/2026

💥Presley💥

🦸🏼‍♀️ Meet our Warrior of the Week, 9 month old Presley living in Arkansas.

❤️ Presley was born with congenital heart defects that were detected at her anatomy scan. Since birth, she has undergone surgery, battled countless seizures, and endured critical hospitalizations.

😊 And she has done it all with a smile on her beautiful face!

🫶🏻 You are such a brave warrior, Presley!

➡️ Visit www.creld1.com to donate & to learn more about creld1.

30/03/2026

A new spotlight on CRELD1 is here, thanks to Rare Awareness Radio! 💜🎙️

The Winter/Spring 2026 CRELD1 Warriors feature brings together clinicians, researchers, and families to share where we are and where we’re going. From early diagnosis and genomic sequencing, to lived caregiver experiences and the future of treatment, this article captures the momentum building across our community.

Inside the issue:
• A brief introduction to CRELD1 and emerging understanding
• The caregiver experience and diagnostic journey, featuring our very own Dana Brenner
• How genomic sequencing is reshaping detection
• Research insights and future therapeutic directions
• Building a foundation for the next family, featuring the Clatworthy family

This is exactly why our community exists: Awareness leads to diagnosis. Diagnosis leads to research. Research leads to hope. 💜🧬

👉Read the full article at the link in our bio or copy&paste the link below into your browser👈

https://lnkd.in/etase7ky

26/03/2026

3.26 is PURPLE DAY!

💜 Today we wear purple in support of those with epilepsy.

🧠 Our goal is to raise global awareness, end stigmas, and educate.

⚡️ Epilepsy is a brain disorder that causes recurring, unprovoked seizures.

🧬 Many of our CRELD1 Warriors suffer from epilepsy, many of whom have relentless seizures that require rescue medications and/or hospitalizations to stop them.

23/03/2026

💥Angus💥

🦸🏻 Meet 4-year old Gus from the UK!

💪🏼 Gus works hard every day to overcome his sensory processing disorder and developmental delays. He battles seizures as many of our creld1 warriors do.

😊 Still, Gus has the brightest smile and the most joy-filled laugh. He loves the outdoors and is so energetic!

➡️ Visit www.creld1.com to donate & learn more about creld1.

17/03/2026

💥Zoë💥

Today we introduce and remember our Warrior, Zoë. Two years ago, Zoë’s battle with CRELD1 came to an end. She fought fiercely and bravely. Within her 6 years on this earth, she lived a life that overflowed with love. 💜

🌟Zoë loved traveling, attending school, playing with friends, and participating in dance class… but what she loved most was being home with her mom, dad and sister.

💪🏼 She faced many challenges such as dystonia, hypotonia, relentless seizures, and tough hospitalizations. And yet, she took on each battle with joy and bravery; she was a warrior.

🪽 We remember Zoë and all of our CRELD1 angels. They have taught us so much about navigating life with this rare condition & our fight continues in their honor.

➡️ Please help us find a cure by donating at www.CRELD1.com

09/03/2026

💥 LEVI 💥

Meet our very first Creld1 Warrior of the Week!

🦸🏻‍♂️ Levi is 7 years old and has faced more challenges than most do in a lifetime.
💪🏼 He battles seizures & feeding complications resulting in difficult weight gain.
🤗 In spite of the challenges, he radiates pure happiness, gives the best hugs, and is always on the go.

You are a true warrior, Levi.

➡️ visit www.creld1.com to donate & learn more about creld1.

07/03/2026

Stay tuned for our 💥Warrior of the Week💥 campaign!
We are excited to introduce our creld1 warriors, starting this week.
Though they are few, they are SUPER! 🦸🏻✨🦸🏽‍♀️