How did you first become aware, and part of, the Niemann-Pick community?
I met Susan Green at a meeting in the early days when we were first working on developing miglustat for Gaucher disease. She introduced me to NPC and the wonderful NPUK community.
What motivates you to advocate on behalf of the community as a Trustee?
I have been a co-opted Trustee for many years but I had not become a full trustee in the past as I felt I was not able to give it enough time. Post-pandemic I am travelling a lot less and felt this was the right time to become a full Trustee.
What are your hopes for the future of the community? What do you hope we can achieve together?
The NPUK community already has done and continues to do remarkable things ranging from raising awareness through filmmaking, patient support and advocacy and running a scientific and family conference every year. As a scientist I want to see approved combination therapies as standard of care for NPC within the next few years. I also hope that the new NPB enzyme replacement therapy will become standard of care for NPB patients as soon as possible. As a parent I want to see every individual living with NP disease and their families get the support they need at every stage of these diseases. We can and should always aspire to do more and knowing NPUK as I do, I have no doubt that the organisational will continue to be transformational across its diverse remits. It is a great pleasure and honour to continue to work with you all.
Thank you for taking the time to sit down with us Fran, we are looking forward to seeing the positive progress you will no doubt help us to make! If you’d like to ask Fran any further questions you can reach her at fran@npuk.org
