Today, we are taking some time to wish the amazing dads in our Duchenne muscular dystrophy community a very Happy Father’s Day!
Meet one of our community’s super dads: IIan Ganot! Ilan says finding a balance between family and work is never perfect, but so important. IIan and his wife Annie (a long time Gal on our Gals for Cal team) are founders of Solid Biosciences, a Cambridge, MA-based life sciences company focused on developing treatments for Duchenne muscular dystrophy. The company’s mission is to advance the best science and accelerate the discovery and development of treatments that may benefit all patients with Duchenne. But his most important job: being dad to the three children he shares with Annie, Eliya (13), Eytani (11), and Alexy Lulu (7).
Eytani was diagnosed with Duchenne muscular dystrophy in 2012 while the family was living in London. At the time, Ilan was working as an investment banker.
When Eytani was diagnosed, IIan had never heard about Duchenne. The words “Duchenne” and “muscular dystrophy” meant nothing to him. He spent a lot of time researching to familiarize himself with the landscape of the disease at hand. He immersed himself in learning what patient groups were out there, what companies were working on solutions, the biology of the disease, clinical manifestations, and who the experts were.
Realizing the severity of the disease, IIan reached out through a number of friends, advisors, and people he was close to, working with Annie to channel their pain and sadness to a positive place. After Eytani’s initial diagnosis, IIan witnessed other parents in the Duchenne community making a massive impact and thought of ways he could empower others to do great things as well.
“In 2013, we really kind of put this into gear, and started digging, and seeing where we got to. I think it was about six to seven months later we picked ourselves up and moved to America to start Solid.”
Through his work at Solid, Ilan says many strides have been made. One of the things he is most proud of is their early interest in gene therapy, which is now proving to be an extremely promising treatment for Duchenne. He and Annie received a lot of feedback at the time from experts that they were five to ten years too early for this technology. But they stayed interested in its potential and IIan says, “I’m grateful because there’s a lot of gene therapy coming to Duchenne right now. And I personally believe Solid has a major role in that development.”
IIan is an active participant in the Duchenne community. He says, “It’s been a challenging journey, but we never thought it was going to be easy. And it wasn’t, it isn’t, but it’s ok. Nobody promised you it would be easy when you get DMD, that’s for sure.” He continued, “One of the things you get when you find yourself in these situations with family is you get perspective of what’s important in life and what’s not important in life. Then you can focus on what is important.”
Duchenne hasn’t stopped the family from enjoying all the little moments together. One of IIan and Eytani’s favorite things to do together is build Legos. While finding that perfect balance is always difficult, one positive thing that came out of the COVID-19 pandemic was getting to spend more time together and enjoy family dinners every night. “It was very special. We manage to make the most out of it, I hope, but there’s never enough,” says IIan.
When asked what advice he has for families who just received the Duchenne diagnosis, IIan answered, “I think there is no easy way out with Duchenne, but there could be ways to make a difference. Whether it’s for yourself and your family or for more than just that. What I encourage other people to do when these things happen to them is to take some time off, look around, think who you are, what you can do, what do you want to do, and what is suitable for your life situation.”
To learn more about Ilan’s work at Solid Bioscience, visit solidbio.com.