Chair’s Report
Welcome all. Special hello to Mwaura M Isaac who is the National Coordinator of the Albinism Society of Kenya, who asked to come along as an observer . I would like to thank Daniel, Kevin, Janis and Andrea for organising the venue and children’s party.
The primary aim of this fellowship is to enable its members to share and exchange information about albinism. I see us as an organisation where the key focus is enabling people to do this in a number of ways: Through meetings such as the BBQs, event days, our website and the forum, the helpline and our magazine. The focus of the fellowship was traditionally that of bringing parents together. In more recent years members have expanded this role as these children have grown up and are now adults, who chose to socialise down the pub occasionally. In trustee meetings we are discussing what we should do next. One area is to try to bring together teenagers together for an adventure weekend so that they may develop friendships and confidence. We are aiming for a conference, probably a one-day event, with perhaps social events tacked on at either end, for next year. Conference venues are extremely expensive. Grants may be applied for, but we are finding there are more hoops to jump through! Applications require organisations to have the CRB checks and we have found ways to do this for our trustees relatively cheaply using the ‘Safe Child’ scheme. Thanks go to Lorna for this.
We are still frequently contacted by the media. Robin deals with this for us, responding appropriately to both reasonable and sometimes unreasonable requests. Will has taken up the task to upgrade our administration of the fellowship with the on-line Groupspace membership database which should make many tasks easier and more efficient for members. Daniel who is working with him on this, also has his web-master duties, for which we are very grateful. We co-opted Joanne Bennett as a trustee this year. We thank many people who have done something for us, big or small, it all makes a difference. Although we are a small organisation, I hope have helped people in the albinism community in the UK and Ireland.
From time to time I get forwarded emails, via our website, from people seeking help from abroad. Where possible, I direct them to local albinism communities. I explain that we can offer some advice, but that there is no substitute for that local knowledge. Our focus, our expertise, I explain is really within the British Isles. I offer our organisation as a model of how they might develop, I say ‘if it has worked for us it might work for you’. I realise that our website is viewed worldwide and that perhaps, we may help some people all around the world.
Thank you for listening.
Martin Lang.