Jeff D’Angelo’s Story
Shortly after the birth of our son JJ it was clear there were some complications and we knew JJ was different. We went to every specialist across the country and tried every therapy under the sun. It wasn’t until he was 4 years old, we discovered he was 1 of 37 kids at the time with an ultra-rare mutation to his gene called CHAMP1. There was little information available and only one doctor in the world researching the disease.
We knew that nothing would change for us and the other families affected unless we advocated to accelerate research with hope of meaningful treatments. Over the last 4 years, we have hosted conferences with scientists, stakeholders, and other families with kids affected. We have recruited and funded scientists to study the disease. Our non-profit is small but growing. We have many initiatives, but they complement our main goal which is raising money to accelerate research. I’m a Highschool teacher but currently the president of CHAMP1 Research Foundation and devote most of my free time working to oversee and manage daily operations.