After many years of dedicated service, Mark Dearlove is stepping down as Chair of Trustees at SMA UK.

Mark first chaired The SMA Trust from 2000 to 2015, before returning to lead SMA UK in March 2020, just as the world was about to face the unprecedented challenges of the Covid pandemic. 

Reflecting on his time in the role, Mark says: 

“It has been a great privilege to be part of such an incredible charity for the last six years. Little did I know that Covid was around the corner, and it was an incredible testament to the team and to the SMA community that we were able to navigate such a difficult time together. We came through the other side and have built the charity significantly, thanks to the leadership of our two CEOs, Angela Smith-Morgan and Giles Lomax, and the incredibly dedicated staff and trustees at SMA UK.” 

Mark also highlights the remarkable progress made in recent years: 

“There have been incredible advancements in newborn screening and drug treatments, which have had a profound impact on the lives of people living with SMA. I feel honoured to have been part of this.” 

As he steps down, Mark leaves with full confidence in the charity’s future: 

“I’m delighted to be handing the reins over to Gordon, who I know will do a fantastic job as the new Chair of Trustees at SMA UK. Over the next few months I will be working closely with Gordon to make sure the transition is as smooth as possible and the charity continues to operate as normal” 

Welcoming Dr Gordon Harvey as Chair of Trustees
Gordon brings more than 20 years of experience working in rare and orphan diseases, with a strong track record in charity leadership, governance, and advocacy. He has chaired the Rare Disease Nurse Network, served as a trustee for the MPS Society, and has supported a wide range of patient organisations with strategic development and advocacy. 

Alongside his extensive charity leadership experience, Gordon brings over 25 years in the pharmaceutical industry, most of it focused on rare diseases both in the UK and globally. 

Gordon joined SMA UK as Chair of the Board of Trustees in November 2025, and we are delighted to welcome him to the role as he leads the charity into its next chapter. 

Gordon say’s,  

“I’m delighted to join SMA UK as Chair of the Board and very much look forward to working with the incredible team, collaborating with our community, and partners to continue our vital work.”