| Thanks for Everything |
||
 Who would have thought all those years ago that a sprightly wee Lassie from Glasgow with funny fingernails and an even funnier accent would end up organising conferences to bring together some of the finest brains in the world. Carol located geneticists with an interest in NPS and established NPS UK. The rest as they say is history. She has raised the profile of our organisation and brought it to the attention of thousands. I have been through the cuttings. Carol has been in the press more than Victoria Beckham! I know that her decision to step down from the chair has come as a shock to many of you. You all know that Carol would not have taken this decision lightly. It is time for her to ‘take a wee break’ and boy does she deserve it! We would like to express the gratitude of the NPS community to her. Her unstinting dedication and selfless commitment have enabled the charity to thrive. |
||
 |
Along with Carol the other trustees Shirley and Doctor Elizabeth Sweeney have also decided to step down. Dr Sweeney is of course known to you all and has provided medical information in a way that even I can understand. For that we are truly thankful. Shirley has been the Treasurer since the charity's inception. She has encouraged fundraising activity and kept meticulous records of the charity's activities. A great performance and once again we would all like to pass on our thanks. |
 |
Going Forward |
||
| I took a call from Wim Van Schaik who explained that unless new trustees could be found the charity might have to close. I quickly realised that he was not going to take no for an answer. I am delighted to say that I have accepted Carol's invitation to take over the chair and seek to take the charity forward. Key factors in making that decision were the commitments from Kath Lovatt and Wim to continue their sterling work with the help line and the website. These are two key functions which need to be in place going forward. Kath provides the interface between the organisation and the NPS community. She offers support and advice in a way that only a trained professional can. Kath your work is invaluable. Wim keeps the website in order and bullies me into action! I have many friends in the Netherlands and am delighted to add Wim to their number. Carol is a hard act to follow. In particular she is able to understand from personal experience what it's like to live with NPS. My experience is limited to that of being the parent of a daughter who is a spontaneous case of NPS. I have seen many of you at conferences and have been kept in touch with the progress of NPS UK by Claire. For those of you who have not met me I am Claire Sugden´s father. I am a chartered accountant but please don´t hold that against me! Ever since Monty Python immortalised us in the ‘I´m a chartered accountant and I´m boring´ sketch I have felt that I have to apologise. (Those under 40 years of age may need to Google Monty Python!) Anyway I would have no excuse for not knowing where the money was! I was a member of Round Table where we endeavoured to raise funds for local charities whilst having a great time. To be honest the prime objective was to have a great time but we did raise quite a lot of money for local charities in the process. It is a good time to consider what the organisation is trying to do and to assess what can be achieved within the personnel and financial restrictions facing us. We must remember that committee members and volunteers also have a life to lead. We will encourage participation in the activities of the organisation. We must however be mindful of the fact that the charity is here to help the community and not the other way round. I will be meeting up with those people who have indicated a willingness to serve on the committee and will be in a position to introduce you to them shortly. It will take some time before the new committee can organise themselves and become effective. Please bear with us and do not assume that silence means hibernation. It is better to take some time than to rush in and make mistakes. I will endeavour to report back to you in approximately 3 months time by which stage I hope to know a little more on how we will move forward. I have opened a separate e-mail account for NPS matters briansugdennps@btinternet.com. Any urgent matters can be sent to me at that address. I only visit facebook to check the photographs of new babies born to relatives and friends, so please use the e-mail if necessary. I can control and check that regularly. Brian Sugden |
||
Newsletter March 2011
