The Foundation
Our Story So Far
April 2018
The Diagnosis That Began It All
On April 10th, 2018 co-founders Jeff and Katis D’Angelo’s 4 year old Jeff Jr “JJ” was diagnosed with a rare neurological disorder called CHAMP1. They quickly found a Facebook group where 37 families were connected.
Desperate for their son, they began calling researchers around the world. There was no cure or treatment options, a very small amount of information available, and two scientists that were involved in research.
May 2018
The CHAMP1 Research Foundation
On May 15th 2018, the CHAMP1 Research Foundation was created with the goal of finding a treatment and cure for children affected with CHAMP1 mutations.
June 2018
Formation Of The Scientific Advisory Board
In June 2018, the CHAMP1 Scientific Advisory Board was formed.
The founding members were Dr Wendy Chung, Dr Kozo Tanaka & Dr Davor Lessel.
June 2018
First Family Conference
Prior to meeting in person, families relied on sharing advice, hope and communicating through our Facebook group, which is still being utilized today.
On June 28th, 2018, 18 families met at the Rosen Centre in Orlando, FL for the first time.
With the help of researchers from CHOP, Baylor and Columbia University our families were able to donate samples, develop a plan and vision for treatment and were empowered to work together going forward. Families were able to discuss with researchers, share experiences and create unbreakable bonds.
July 2018
CHAMP1 Biobank Established
In July 2018 the CHAMP1 Biobank was established at the Coriell Institute to create LCL, Fibroblasts & IPSC lines.
December 2018
Non-Profit Status Granted
On December 20th 2018, the CHAMP1 Research Foundation received 501(c)(3) non-profit status.
February 2019
1st CHAMP1 Mouse Model
In February 2019 the 1st Mouse model in the US was nominated and created at UC Davis’ KOMP group led by Dr Kent Lloyd and Dr Suma Shankar .
May 2019
1st CHAMP1 Rat Model
In May 2019 the University of Edinburgh created the 1st CHAMP1 Rat model.
August 2019
3 Additional CHAMP1 Mouse Models Created
In August 2019 three additional mouse lines were created at Jackson Labs.
February 2022
First Funded Research Project
The CHAMP1 Research Foundation funded the first CHAMP1 Research project at the CHOP in partnership with Viralgen. The project was to supply gene therapy vectors to treat CHAMP1 mice.
October 2022
Second Family Conference
After the success of the first family conference, on October 21st 2022 the second family conference was held, again at the Rosen Centre in Orlando, FL.
There were many more families, CHAMPs, scientists and researchers in attendance showing just how much the community has grown.
October 2022
CHAMP1 UK
On October 29th, 2022 CHAMP1 UK formed to work alongside The CHAMP1 Research Foundation.
It gained official UK charity status on September 29th, 2023.
January 2023
The CHAMP1 Research Foundation Europe
On January 29th, 2023 The CHAMP1 Research Foundation – Europe was founded to work with the 2 existing CHAMP1 non-profit organisations.
July 2023
Third Family Conference
On July 14th, 2023 the third family conference was held In Italy, giving families from Europe their first chance to meet others with CHAMP1 along with our founders and other CHAMP1 experts.
