Insights:Open letter to the Duchenne Community

From Ilan Ganot, Founder and departing President and CEO of Solid Biosciences

To my Duchenne family,

In a press release issued this morning, we announced the closing of Solid’s acquisition of AavantiBio, a privately held, gene therapy company focused on transforming the lives of patients with rare disease, and a concurrent $75 million investment. As part of this transaction, I have stepped down as Chief Executive Officer (CEO). However, I remain on the Board of Directors and as a strategic advisor to Solid’s new President and CEO, Bo Cumbo. I have known Bo for many years and have confidence in his capabilities as a leader as well as his knowledge and experience bringing Duchenne treatments to patients.

I want to take this opportunity to share my thoughts directly with you, the Duchenne community, which I have grown to know and care deeply about over the past decade. As many of you know, when Annie and I received Eytani’s diagnosis in 2012, the therapy landscape for Duchenne muscular dystrophy was bleak, with no real options for stopping or slowing the progression of the disease. As parents, we channeled our love and desperation into action, moved from London to Boston seeking out the best scientists and businesspeople to build Solid, a company that could offer groundbreaking beneficial treatments for patients living with this devastating disease. We suspected that it wouldn’t be easy, but we always knew it would be worth it.

Fast forward to today. With Solid almost 10 years old, we’ve achieved many milestones, and have also faced our fair share of challenges. As this community knows well, Duchenne is complex, and as parents we must be resilient. Challenges are part of every important journey, and even more so in the world of biotech and drug development. Through collaboration and communication, transparency and focus, and the hard work of nearly 200 people over those years, Solid has played a critical role in advancing gene therapy treatments for Duchenne and exploring what is possible in the current state of science, technology and clinical care. I am hopeful that this energy and mission will continue to drive progress and success across the landscape of companies and researchers working diligently on therapies for our boys.

With the data generated in the IGNITE DMD clinical trial showing improvements in patients’ lives, I am eager to see our next generation gene therapy program for Duchenne, SGT-003, move rapidly into the clinic next year pending IND acceptance, and I am excited about the potential benefit it can provide to patients with Duchenne. Additionally, and resulting from the merger and capital raise, Solid will become a stronger company that is better positioned for the future, and while our focus will broaden to include a portfolio of neuromuscular and cardiac programs, it will still be led by SGT-003 for Duchenne.

I want to thank the Duchenne community for your unwavering support, especially to all patients and families who participated in the IGNITE DMD clinical trial—a decision that I know is not made lightly. I know firsthand how important each moment with your child is and recognize that participating in a clinical trial impacts the entire family unit.

Solid was created through necessity, in an attempt to turn a challenging - life changing - moment into something positive and impactful. I am proud of what Solid has achieved and may still do in the future. This is a great moment to leverage our science and learnings to explore what’s possible, and make an unprecedented impact on the lives of patients. With strong leadership, dedicated teams and rigorous science being conducted every day, Solid will be well-resourced and well-positioned for our future.

Lastly, I want to share a memory and the wisdom of the first parent of a child with Duchenne Annie and I ever spoke with, Kerry Rosenfeld, back then in October 2012. Kerry said “it’s a terrible club to be a member of, being parents of kids with Duchenne, and nobody wants to be a member. However, once you are part of that club, there are good things too”. The good things we gained are perspective, and a whole lot of new friends like you all.

Sincerely,

Ilan Ganot