CHAMP1ResearchFoundation

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United States
Spring Hill, FL
CHAMP1ResearchFoundation

Our vision is to find effective treatments and a cure for the ultra-rare neurological disorder CHAMP1

08/15/2026

Help Sophie Coates raise money to support CHAMP1 UK

08/03/2026

A special thank you to all of our sponsors, volunteers and participants for making the 6TH Annual Drive for CHAMP1PONS a huge success. We couldn't do this without you.

07/26/2026

Happy 16th birthday to our CHAMP1ON Mae 🎂🎁🎈
We hope you have the best day 💜

07/22/2026

Join us in wishing our CHAMP1ON Charlie a very happy 6th birthday 🎂🎈🎁
We hope you have an amazing day! 💜

07/21/2026

We are delighted to welcome Julie Banda, DNP, APRN, CPNP to the CHAMP1 Research Alliance Family & Scientific Engagement Conference 2026.

Julie is a pediatric nurse practitioner in the Neurogastroenterology Program at Children’s Wisconsin / Medical College of Wisconsin, home to the largest pediatric cyclic vomiting syndrome (CVS) referral center in the country.

Why it matters for our community:
Many CHAMP1 families live with daily gut challenges.
Julie’s work on the gut-brain connection speaks directly to improving comfort and everyday life for individuals with CHAMP1. 💙

📅 3 to 6 September | 📍 CHOP | 📝 Register: https://chmp.one/conference

07/13/2026

🧬 MEET OUR 2026 SPEAKERS! 🧬

The line-up for the CHAMP1 Research Alliance Family & Scientific Engagement Conference 2026 continues to grow, and we could not be prouder. 💙

Meet some of the scientists and clinicians joining our global community in Philadelphia to present their work.
From cutting-edge genetics to the science shaping future treatments, these are the people helping to move CHAMP1 research forward, and you will be in the room with them.

📅 Thursday 3rd to Sunday 6th September
📍 Children's Hospital of Philadelphia (CHOP)
🏨 Preferential rates at the Sheraton Philadelphia University City Hotel
💜 Attendance Support Grants available for families who need help with travel and accommodation

Not registered yet? There is still time, but places are limited.

📝 Register, apply for a grant, and find the hotel booking link at: https://chmp.one/conference

We cannot wait to see you there. 🧬💜

07/02/2026

Wishing our champ1on Oliver a very Happy Birthday! Today we celebrate him turning 10!! 🎂 🎈

06/25/2026

🧬Happy Rare Chromo Day!

Today we celebrate every family affected by a rare chromosome and gene disorder around the world.

With the help of Unique who run this campaign we were able to create the CHAMP1 Gene guide to support our families and CHAMP1ons 💜

If you haven’t read it yet, it’s available here:
https://rarechromo.org/disorder-guides/

06/23/2026

Happy 8th Birthday to our beautiful Eloise!! 🧁

06/22/2026

Today we celebrate our handsome champ1on Jett turning 7!! 🎂 🎈

Address

Spring Hill, FL

Telephone

+18136007950

Website

http://CHAMP1Foundation.org/

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