The CHAMP1 Foundation is an organization created for parents of children with developmental delay, hypotonia, cerebral palsy, autism, and epilepsy among others diagnosed as a result of a change in the CHAMP1 gene.
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CHAMP1 NEWS - July Newsletter 



A huge THANK YOU to our friends, family, supporters and sponsors. We were able to raise our goal: $25,000 at our First Annual Drive For #CHAMP1ONS Golf Classic. Every dollar goes directly towards the mission to find treatments for kids affected with CHAMP1.

Check more about the event on our social media. 

A huge thank you to all our GOLF CLASSIC event supporters
If you weren't able to support our event and would still like to support CHAMP1 Research: 
Donate here

2021 Drive for CHAMP1ONS Golf Classic - Highlights

CHAMPION JJ and the Tampa Bay Buccaneer Alumni Cheerleaders

Three years helping to pave changes 

So thankful for all the supporters who have helped partner with us along this journey!

Check the Foundation website»

Meet our Champion Lucca and his journey


Lucca is almost two years old and is working really hard to start to walk and run around. 

More about this CHAMP1ON »

Undefeated: CHAMP1 now has a Podcast!


Troy and Stephanie are parents to their ultra-rare CHAMP1ION, Jett. Jett was the 74th diagnosed person in the world with CHAMP1 in 2020. This monthly podcast aims to bring light to this genetic disease, while sharing stories, experiences and updates regarding research efforts within our community. Grab a coffee and stick around, we’re so happy you’re here!

Listen the first episode now »

Support a CHAMP1ON today


Neurodevelopmental Phenotypes in Individuals with Pathogenic Variants in CHAMP1

The largest and most comprehensive report on #CHAMP1 patients to date. Thank you Wendy Chung for your continued work and support for our community.

Read report »

CHAMP1 plays a role in cell survival through regulating Mcl-1 - expression - Dr. Kozo Tanaka

This study highlights the role of CHAMP1 in certain cancer cells. A topic that requires further investigation is the hearts and minds of our families. Thank you to our founding Dr. Kozo Tanaka and his continued dedication to our community.

Read report »


Mount Sinai, Seaver Center for Autism Research and treatment and CHAMP1 families are partnering for an in-depth clinical study. Look for more to come soon.

For more information please contact the Foundation »


Funraise website - CHAMP1 families 

Champ1 families are using this platform to funraise, check now which team you would like to support. 

If you are a researcher 

Please contact our Foundation and we'll connect you with all research groups involved with CHAMP1 initiatives. 

Contact us >>
If you're a CHAMP1's parent

There are loads of ways to support the Foundation and its initiatives, from participating in studies to engaging with fundraising. 

Chat with a CHAMP1 parent >>
Donate and support CHAMP1 Research
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CHAMP1 Research Foundation
Our mission is to improve the lives of those affected by CHAMP1 disorders through clinical research, effective treatments, public awareness, early detection, family support and patient advocacy.

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CHAMP1 Research Foundation · 1367 Whitewood Ave · Spring Hill, FL 34609-6165 · USA

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