I was diagnosed with the ALS form of MND in July 2019, with a SOD1 variant. I was the third person out of five family members to be diagnosed since 2017/18 and I’m the only one still living. I have lost my father, two aunts and a cousin. The disease has devastated our family, and I have vowed to do all that I can, while I can, to help and support those living with the disease and their families.
As well as fundraising which I love to do alongside friends and family, I felt passionate about raising awareness of MND both publicly and politically. So, I joined the campaigns volunteers team working alongside key members of the Association and other volunteers. I have worked on a number of public campaigns that called for support and change in many governmental areas that directly affect the MND community, most notably the Prescribe Life campaign. Coinciding with this, I set up a support group for the SOD1/tofersen community where we meet monthly to offer help, advice and support to each other.
I also am a member of the Policy and Advisory Campaigns Group, where I provide an independent voice in advocating for change and help to share the perspectives of mine and others living with MND, to senior leaders within the MND Association. I have found working within this group incredibly fulfilling as I feel that I have been able to have a direct influence on policy and campaigning at the Association.
I bring my skills as a business leader to the role of trustee, having had been a senior leader in a number of premium and luxury retail businesses. Throughout my 25+ year career, I have lead teams ranging in size from 6 to over a 1,000 employees and roles which have covered Operations, Commercial, Divisional and Director. I have also sat on various committees, ranging from sitting on PTA committees at my daughter’s school, DE and I groups in the workplace and more recently as part of my local Association branch committee. I believe this has enabled me to develop a set of skills that allows for collaboration, compromise, understanding and respecting all views and opinions.
I will bring my lived experience, plus that of my family members and many friends I have met with MND to ensure that we are laser-focused on doing all we can to support the MND community and deliver a world free from MND.