June 03, 2021

Helping to Further the Patient Impact of Genomics with DadVocate and Genome Scientist at Congenica - Charles Steward

30 minutes

ONCE UPON A GENE - EPISODE 085

Charles Steward was one of the first scientists to work on the human genome project, led the original research analysis for human chromosome 10 and has established international collaborations on various projects. He's currently the Patient Advocacy and Engagement Lead for Congenica. He's a brilliant scientist and a super DadVocate to two children with rare diseases and medical complexities.

EPISODE HIGHLIGHTS

Can you tell us about your background and experience with rare disease?

In 2013, my wife and I had a baby girl and she was in intensive care for a month as a result of being born prematurely. My daughter was about 8 months old when we noticed she wasn't doing things she had been doing- taking interest in things and her surroundings, laughing or smiling. She started making movements, her eyes rolled and her head would shoot to one side. She was diagnosed with West Syndrome, a serious type of epilepsy that can be fatal. My son was born at 28 weeks and suffered catastrophic brain damage during birth. Being a genome scientist and the father of two children with severe neurological disorders I've thrown myself into the world of advocacy and have a specific interest in cerebral palsy and epilepsy.

As a scientist and then a rare disease dad, what did you notice from the patient perspective?

One of the most amazing things was being in contact with clinicians because they genuinely care for patients. Some of the clinicians that worked with our family, I also worked with professionally through Congenica. I also spoke a lot with scientists and I noticed that there was little exposure to the patient voice. When I spoke to them about it, they were struck by the importance of what they were doing. If patients can get in front of scientists, it makes a difference in the work they do.

How do you balance your career, advocacy work and being a dad to two kids with severe healthcare needs?

My children are healthy in that their seizures are controlled. My wife cares full time for the children and she spends the day talking to therapists, talking to physicians, arranging appointments and coordinating equipment maintenance. It's sometimes difficult to separate my career and advocacy work because I'm always connecting and speaking with people and sharing ideas and my passion is more than a career.

What advice do you have for other dads?

People deal with things and cope in very different ways. What's important for me is to be supportive of my wife who does the heavy lifting. I think it's a dad thing to do throwing myself into my work. It's difficult, but important that as dads, we share the burden.

LINKS & RESOURCES MENTIONED

Rare Disease Fair

http://rarediseasefair.com/

Congenica

https://www.congenica.com/

International Cerebral Palsy Genome Consortium

https://icpgc.org/

CONNECT WITH EFFIE PARKS

Website

https://effieparks.com/

Twitter

https://twitter.com/OnceUponAGene