Today we’d like to introduce you to Jeff D’Angelo.
Hi Jeff, thanks for joining us today. We’d love for you to start by introducing yourself.
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. We have a handful of family volunteers worldwide who donate their free time and skill sets to advance the mission. We have gone from 0 researchers in the USA to having CHAMP1 Studied in 10 institutions, including Children’s Hospital of Philadelphia, St Judes, Mt Sinai and UC Davis. We are pursuing gene therapy and drug repurposing projects to impact this generation of children. We recently had a conference at the Rosen Centre in Orlando where 22 families from around the globe alongside researchers, attended.
Families participated in research, including blood samples. Scientists presented, brainstormed, and collaborated on the next steps and best treatment strategies going forward. Families were comforted knowing they are not alone and surrounded by only other groups of parents who understand exactly what they are going through. They were educated and empowered with hope as research is progressing as fast as possible. We are relentlessly pursuing funding options to see these projects through as quickly as possible. We have worked strategically to store our children’s data, blood samples, and animal models for research to make it freely available to any scientist. We are working to de-risk the process for anyone’s involvement and actively looking for funding and other game-changing scientists to help drive this mission forward.
Please watch our video https://www.youtube.com/watch?v=C–NTSi0GIs&t=3s
or visit our media page for articles and more details https://champ1foundation.org/media/articles/
Would it have been a smooth road, and what are some of the biggest challenges you’ve faced along the way?
It has been a life-changing rollercoaster. The emotions and heartache of having a child with a life altering condition are draining, emotional, and filled with daily challenges. He requires 24/7 care, and there is little help outside of my wife and I. We have learned to take life one day at a time and be grateful for every achievement he makes. Our life is different, and we must account for him in every small and large decision we make. We are determined to give him the best quality of life and choose to have hope even when at times the future may look dark.
Let’s switch gears a bit and talk business. What should we know about your work?
I’m a P.E. teacher and Basketball coach at Central High School during the day. I’m a proud father, husband and president of the CHAMP1 Research Foundation every other moment. I have learned more in the last few years running this foundation than in any profession or walk of life. I’m proud of the tenacity and work ethic I have found in myself due to fighting for my son alongside my wife. I aim to change his life and the other kids like him worldwide.
Are there any apps, books, podcasts, blogs, or other resources you think our readers should check?
I Have faith in God and try to remain positive in his promises.
Contact Info:
- Website: www.CHAMP1Foundation.org
- Instagram: @CHAMP1RESEARCH
- Facebook: @CHAMP1RESEARCH
- Twitter: @CHAMP1RESEARCH
- Youtube: @champ1researchfoundation103
