Profile: Ben Jackson

My responsibilities: They’re right across the board – fundraising, memberships, PR, and strategic planning. I give support counseling, provide information to newly diagnosed patients, and run annual awareness seminars.

Our team: We have a part-time Admin and Accounts Manager, casual Admin employees through the Disability Employment Network, and six regular volunteers working from 2-12 hours a week.

Our toughest challenge: Creating a profile. More people are affected by lupus than by MS, leukaemia and muscular dystrophy combined, but a recent survey showed that only 7% of people of people not directly associated with a lupus patient knew of the disease.

How we manage skilled volunteers: We make sure that our time frames match theirs, that they have the appropriate skill set for the task, and that they feel inspired by seeing how their efforts will help us.

Extra tips for managing skilled volunteers: Be relaxed. Set plenty of slack into your project timeline. Volunteers do have lives that can get in the way of their work for you. They will also gain a lot more by meeting some of the people they are helping.

How I learnt about Lupus: Mainly on the job. Understanding the social implications of the disease has inspired me to do more.

What I find most rewarding: People living with lupus often have little or no social network as they can’t work and find it difficult to get out. Receiving a five or ten minute phone call is a very positive experience for them.