Avalynn’s Run4Rare Glow Run/Walk

JULY 19 2025

Walk with us, step by step, as we share Avalynn’s brave journey with AGO1-related syndrome.

As parents, we’ve watched our sweet girl face challenges with more strength and courage than we ever imagined possible. Her diagnosis has brought uncertainty, but it’s also brought a deep sense of purpose—to advocate, to learn, and to connect with others who understand this rare condition.

We’re currently working to raise funds and awareness for a very special and crucial international conference in Prague, Czech Republic. It’s one of the only gatherings in the world focused on AGO1/2/3-related neurodevelopmental disorders—bringing together families like ours, along with researchers and medical professionals, to share the latest breakthroughs, personal experiences, and hope for a better tomorrow.

What are Agronaute syndromes?

Learning that your child has a rare disorder is something no parent is ever prepared for.

Agronaute syndromes are incredibly rare neurodevelopmental genetic disorders with less than 150 people diagnosed world-wide. Affected individuals may suffer from delayed motor development, seizures, problems speaking and understanding, eating difficulties and cognitive impairment. We know little about these recently discovered rare diseases, which brings no comfort to families like ours. That’s why connecting with researchers, doctors, and other families through this upcoming conference in Prague would mean the world to our family.

💖 Every step counts — whether you run, donate, or grab a shirt to show your support!

 Kindly note that this is a fundraising event. All proceeds will go toward supporting Avalynn’s medical journey and helping her attend an important medical conference in Prague. Your support through registration, donations, or event shirt purchases is truly appreciated. 

💖 How You Can Help

✅ Join the Run: UPDATE: Registration closes Thursday, July 17th 2025!!
Register Here : Registration fees apply

👕 Buy a Shirt: UPDATE: Last day to purchase a T-shirt is Monday, July 14, 2025!!
Shop T-Shirts

Sponsor with Love –
If your heart feels pulled to support Avalynn’s journey, we’d be honored to have you as a sponsor. Whether you’re a company or a caring family, sponsorships start at $250—and every dollar helps us take another hopeful step forward. Your generosity makes a real difference! To learn more contact Ashley at 713-471-7997 or run4avalynn@gmail.com.

EVENING GLOW RUN

📍 Event Details

  • Date: Saturday, July 19, 2025 5PM-9PM
  • Location: John Paul Landing Park: 24202 West Rd, Cypress, Tx 77433 Pavilion #3
  • Distance: 5K Glow Run Optional (show support by purchasing a T-Shirt or donate)
  • For more information on the Conference click on the link below: https://argonautes.ngo/en

OUR SPONSORS

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