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.
HOW IT STARTED
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 2 Scientists that were involved in research. May 15th of 2018 The CHAMP1 Research Foundation was created with the goal of finding a treatment and cure for children affected with CHAMP1 mutations. December 20, we received our 501(c)(3) nonprofit status
FIRST FAMILY MEETING
Prior to meeting in person families relied on sharing advice, hope and communicate through our facebook group which is still being utilized today but 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.