Amicus Therapeutics, Lunch and Learn 6/3/17

Delegate feedback- "Inspiring","Motivational", "Thank you for sharing your story" "Outstanding" "Personalises our jobs" 

On Monday 6th March I had the privilege of speaking to employees at Amicus Therapeutics in Gerrard's Cross, at their Pompe in Focus Lunch and Learn. 

I gave a patient's perspective of what it is like to live with Pompe disease, a rare progressive neuromuscular disease. 

I talked about events leading up to my diagnosis, the diagnosis itself and how I manage to continue to enjoy and be a part of family life. I talked about coming to terms with using night ventilation when our children were very young. I also explained how I was thrown a lifeline in 2006  when I was offered Enzyme Replacement Therapy and how this has had a positive effect on my lung function readings and on my daily life. I demonstrated how important it was that pharmaceutical companies provide therapies for those with rare diseases and what a positive contribution it makes.   

I demonstrated that living with a long term medical condition or disability need not hold you back and in fact it can have a positive outcome. I talked about how I had started my own business and  that I am passionate about helping others particularly those with a medical condition / disability achieve their potential. 

It was a privilege to be asked to be part of their event. 

A. Duckworth