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.

CHAMP1 NEWS - June Newsletter

CHAMP1 Research Foundation Golf Tournament

A huge thank you to everyone that came out to support JJ and the life changing mission the #champ1researchfoundation is working towards! HCA Florida Oak Hill Hospital Walmart Brooksville - Cortez Blvd Lisa Cunningham, Realtor at Keller Williams Realty Elite Partners LaRocca Chiropractic

With your help we were able to raise over 30k for accelerating research towards treatments for kids affected by #CHAMP1. We are overwhelmed with gratitude from everyone’s kindness, support and generosity!

If you did not get a chance to participate and still would like to donate visit CHAMP1foundation.org

#CHAMP1GOLFTOURNAMENT #CHAMP1 #CHAMP1Research

Donate to CHAMP1 Research Foundation now

RESEARCH UPDATES AND REPORTS

Simons Searchlight new quarterly report

https://www.simonssearchlight.org/research/what-we-study/champ1/

Simons Searchlight recently published a new report on participants with CHAMP1. The report covers helpful information from data that participants like you have provided through surveys and phone calls.

What’s Featured in this Quarterly Registry Report?

The newest report looks at some basic information on your genetic community and uses the Quality of Life Inventory to ask caregivers to describe how their family member with CHAMP1 responds to life experiences. This scientific survey measures the quality of life by looking at the following areas: physical health, psychological well-being, social relationships, leisure, and independence.

To see the report and other helpful information, go to your gene page on simonssearchlight.org. Make sure to check your dashboard for any new surveys that you can take by logging into your account.

Click the button below to learn more about the report and its findings!

Read report

Rare X CHAMP1 Data Collection Program Launch

RARE-X is a collaborative platform for global data sharing and analysis to accelerate treatments for rare disease. RARE-X equips patients to share their data with global researchers, clinicians, and drug developers

CHAMP1 Research Foundation did a presentation together with Rare X on Rare X CHAMP1 data collection program launch. If you missed you can watch the recording below

Watch it here: https://us02web.zoom.us/rec/share/Q5Mn50T5F3BqXAJB3YaW6s-azmPRvAoT7BU1U-ioatZuuuURP2gQWWoq7AId5VWR.gRge4ZWYVXY70A5Z?fbclid=IwAR2bJh-32MY9k1kuq9Or_8QpQ6HxXCItYQWPCWIrvv4fSc8KNRyAhfihzJ0
(passcode: iKer9%Q1)!

It was so informative and really explained how important data collection is… remember, it begins with US, the families! We are the future of CHAMP1

Also, to begin enrollment, please click https://champ1.rare-x.org/

For a quick guide on getting started: https://rare-x.org/wp-content/uploads/2022/05/RARE-X-QUICK-GUIDE-and-FAQ-05-02-22-1.pdf?fbclid=IwAR3NSx6lEdIMb_gKqJRZ4ibb1kD5T3f7fAqS-uAtQkaN0V1qBpmdkhAlzxc

Second CHAMP1 Family and Science Engagement Conference 2022 - October

The Second CHAMP1 Family and Science Engagement Conference will be held Friday, October 21- Sunday the 23rd in Orlando, Florida at the Rosen Centre Hotel.

The cost per night will be 129$ and that price will be honored 3 days prior and post-conference. There will be professional child care, lunch provided and all safety covid measures will be in place.

We look to accommodate every family's individual need(s) the best we can and will work our best to get everyone there who wants to attend.

If you have any questions please contact us: Info@champ1foundation.org

Families
What do I need to do to attend?
Just follow 2 steps:

1. Register now and get the special rate at the hotel that the Foundation managed specially for the conference.
Link here: https://be.synxis.com/?adult=1&arrive=2022-10-21&chain=10237&child=0&config=ORLRH%C2%A4cy=USD&currency=USD&depart=2022-10-22&group=GRPCHAMP1FC&hotel=69869&level=hotel&locale=en-US&rooms=1&theme=ORLRH

2. Tell us more about your family by fulfilling a short form so we can manage the details.
https://docs.google.com/forms/d/e/1FAIpQLSferQHslWIh1puW5ztCDdZ8isCklk5_gz7eUjEwQaqPChroGQ/viewform?fbclid=IwAR2MvLpa8yIOz626gvoTNR-cwcaEkLHz_7QbsFKDhZEd5AklzgOQO5wqN9E

Researchers
Please contact us on Info@champ1foundation.org so we can give you more details.

JUNE's BIRTHDAYS

Check all our CHAMP1ON's birthdays on Instagram: @CHAMP1Research

CHAMP1 AWARENESS

The Epilepsy Foundation of America hosted a webinar "CELEBRATING MEN IN THE RARE EPILEPSIES MAKING A DIFFERENCE" on June 16th. Mike Graglia from Syngap Research Fund - SRF, Bo Bigelow Foundation for USP7-Related Diseases Justin West from KCNT1 Epilepsy Foundation, @jeff_dangelo with the CHAMP1ResearchFoundation and Glen Lloyd of EF were part of this conversation!

"It was great to attend as some of our CHAMP1 kids are also affected by epilepsies" - said Jeff after the event.

HOW TO SUPPORT?

Paypal Donation Page - CHAMP1 families

CHAMP1 families are using this platform to fundraise, check now which team you would like to support.

Donate here

CHAMP1 shop

Check our shop, we have t-shirts and other products to support the Foundation.

Check our shop >>

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

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.

Our mailing address is:
info@champ1foundation.org

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