CHAMP1ResearchFoundation

06/23/2026

Happy 8th Birthday to our beautiful Eloise!! 🧁

06/22/2026

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

06/22/2026

Join us in wishing our champ1on Lily a very Happy Birthday!! Today we celebrate her turning 9 years old. 🎂 🥳

06/05/2026

⏰ 3 MONTHS TO GO! ⏰
Can you believe it? We are just three months away from the CHAMP1 Research Alliance Family & Scientific Engagement Conference 2026! 💜🧬

If you haven't registered yet, now is the time. We cannot wait to welcome our incredible global community to the Children's Hospital of Philadelphia (CHOP) from Thursday, 3rd September through Sunday, 6th September.

Whether you're coming for the latest research updates, the family sessions, or simply to be in the same room as people who truly understand your journey — this is a weekend you will not want to miss. ✨

Here's what's waiting for you in Philadelphia:

🔬 A dedicated scientific symposium with cutting-edge CHAMP1 research
👨‍👩‍👧 Family-focused presentations and a community outing
🏨 Preferential rates at the Sheraton Philadelphia University City Hotel
💜 Attendance Support Grants available for families who need help with travel and accommodation costs

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

Philadelphia is calling. We'll see you there! 🧬💜

CHAMP1Research

06/02/2026

💜 A proud moment for our community.

Last week, the head of our Scientific Advisory Board, Dr. Stefano Berto, was invited to speak at the 30th Annual Advances in Autism Conference at the Seaver Autism Center for Research and Treatment at Mount Sinai — one of the world's leading centers for autism and rare disorders.

Dr. Berto presented his work on CHAMP1 and IL1RAPL2 to an audience of brilliant scientists, clinicians, and advocates — putting our community's research front and center on one of the most respected stages in the field.🧬 In his words:
"Sharing our work on CHAMP1 with such an incredible audience was both exciting and humbling. The strength and experiences of the families and kids affected by these rare disorders are the silent motivation behind every experiment we perform and every discovery we pursue."

We were also honored to have our friend and tireless rare-disease advocate Jeff D'Angelo at the conference, building bridges between families, researchers, and the wider rare-disease community.
Every conversation in rooms like this one moves our CHAMP1ONs closer to answers, treatments, and hope. 💜

A heartfelt thank you to the Seaver Autism Center for the invitation, the warm welcome, and the meaningful conversations. Their work for rare disorders inspires our entire foundation.

06/02/2026

🧬 IT'S OFFICIAL — Run for CHAMP1 is back for its THIRD edition!

This July and August, lace up (or just step out) anywhere in the world. The 5K that brought CHAMP1 families together across continents returns — bigger, more global, and more important than ever.

🏃‍♀️ Run, walk, or roll — solo or with your favorite people
🌍 Anywhere on Earth, between July 1 and August 31
💜 Every kilometer raises awareness and funds for CHAMP1 Research Foundation

Tag a friend you want to bring with you 👇
Save the date. The starting line is wherever you are.

https://runsignup.com/Race/FL/AnywhereintheWorld/CHAMP1

05/04/2026

Happy Birthday to the "Father of CHAMP1," Dr. Kozo Tanaka! 🎂

Today we celebrate the man who started it all. Dr. Tanaka’s team first identified and named the protein that defines our community.

Dr. Tanaka, thank you for your unwavering dedication to our CHAMP1ONs. From your initial discovery to your ongoing work, you have given our families the gift of understanding and the hope for future treatments. 💜

05/02/2026

Join us in wishing our CHAMP1ON Sophie a very happy 9th birthday 🎁🎈🎂
We hope you have an amazing day 💜

04/29/2026

A great article about Stacey and Calum.
They were one of our first CHAMP families that helped our family support group and welcomed many of us after we received our diagnoses 💜

Stacey McPherson's son Calum, 19, is non-verbal after he was born with a rare gene mutation known as CHAMP1.