Motivated by a desire to make a difference to his son’s life, and the lives of others with the same condition, Jeff D’Angelo co-founded The CHAMP1 Research Foundation. He talks to RARE Revolution about his drive to accelerate research and about his hopes of achieving the ultimate goal of a treatment
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CEO Series: meeting the beating hearts behind the RARE brands

1.

What made you want to move into the wide world of rare disease, and then specifically The CHAMP 1 Research Foundation and what did that journey look like?

My wife Katis and I had our world rocked, completely blindsided. We were convinced that my son’s challenges were the result of a birth injury. A phone call on April 6th, 2017, shortly after his 4th birthday, confirmed my son was 1 of 38 kids in the world with a rare genetic mutation to a gene called CHAMP1. It was only discovered a few years before in 2015 and there were only two scientists studying the gene. It became evident that we would not see things progress fast enough to impact this generation of kids unless we took action. We decided if we wanted to see change we would have to drive it ourselves. We immediately launched the CHAMP1 Research Foundation to accelerate research and treatment options for our son JJ and all of the other children affected with CHAMP1. 

2.

What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?

God is teaching me patience! It has felt like an eternity for our community to position ourselves where we now have research tools available. In just under two years we have cell lines and mouse models available to scientists. The opportunities are really just beginning. The biggest challenges ahead are funding research and accelerating the process from basic science to translational research. We have had a tremendous amount of urgency since the beginning and fighting time in the hopes that something will impact this generation of CHAMP1 kids. 

3.

What is your proudest moment in your career thus far?

It’s hard to see progress when you are so focused on the end goal of a potential treatment, I have to force myself to appreciate what our community has done to advance the research process. The most fulfilling moment was hosting and getting to spend time with 20 other CHAMP families from around the world at our first family conference in Orlando, Florida. 

4.

What and who are your personal and professional inspirations and why?

5.

What advice would you give someone considering working in the rare disease space?

​Anyone looking to get involved in the rare disease community, you are entering an environment which consists of some of the most selfless and inspiring people you will ever meet. I’m not sure you will find a career with a more rewarding atmosphere. Coming from self-experience, your eyes are open to a world of compassion and understanding. Be as relentless as the parents of the children you’re fighting for.

6.

Do you think the government does enough for the rare disease community at a local and central level, and what gaps do you see currently or emerging?

I believe they are moving in the right direction but unfortunately it’s slow. It’s crucial that patient advocates continue to voice their needs and work closely with policy makers. It’s going to take the rare disease community to drive and accelerate the pace of change. I don’t believe anyone sitting in my position would be satisfied. There is a tremendous amount of difficulty to gain recognition, access funding or get services for rare and often neglected diseases.  

7.

What would you say are some of the biggest motivators for your employees? 

Currently the community and our partners involved are motivated by the belief in the mission to ultimately help CHAMP1 kids. I think besides the obvious motivation for parents to fight for their children and choosing to live in hope, others are excited to be a part of driving this forward and fostering change. 

8.

What are the toughest parts of being a CEO, and conversely what are the most rewarding? 

The toughest part is managing the emotional rollercoaster of raising a child with special needs, working my day job and trying to complete an endless amount of tasks on a weekly basis. It’s difficult to put your heart and soul into something you’re so passionate about, especially knowing there is still so much to overcome in order to reach your goal. What I find most rewarding is knowing I have the honour to play a part of reaching new milestones. It’s a privilege to work with these families, engaging with researchers and traveling the country to learn and collaborate with like-minded people on similar missions. 

9.

What would be your one wish for The CHAMP 1 Research Foundation for the year ahead?

My biggest wish is to be in a position where we have gained enough knowledge and have the financial ability to significantly impact the children with CHAMP1. Ultimately to have a treatment in place. 

10.

If you weren’t CEO of The CHAMP 1 Research Foundation, what was Plan B?  What did your 10-year-old self want to do as a job?

This gave me a good laugh. My 10-year-old self wanted to be a professional athlete, and although I did play sports competitively, that clearly didn’t work out. Even though I wouldn’t have chosen the difficulty of this journey, I feel blessed and my life has been fulfilled with a far greater purpose.