PTC Therapeutics had their annual kick-off meeting in Cascais, outside of Lisbon from 28th January to the 1st of February. Cormac Fegan, age 8, and his family were invited to give a Q&A session to mark the start of the second day of the event to over 150 attendees from all areas of the company covering all geographic areas.
Cormac broke the ice by impressing the audience with his “floss” dance routine (pictured) before answering questions on his day to day life and what he thinks about taking #Translarna. Once Cormac and his brother Ronan left the stage, Mum and Dad, Ella and Gary, explained how Cormac was diagnosed and the emotional rollercoaster that followed before discussing the fight to access Translarna in Scotland.
The family stressed how difficult it is living with Duchenne, knowing there’s a treatment available but it’s out of reach, as well as the apprehension of watching the days pass by and your child’s abilities slip away whilst the approval process unfolds. The Fegan family urged all PTC staff to continue to fight for approval in all countries and to be mindful of the families hoping and waiting for treatment to begin.
Gary sits on our Board of Trustees and assisted PTC in the development of their ‘Duchenne & Me’ App.
Call to action – Powerchair Football in Scotland
