An update on the future of the Gauchers Association from Jane Jones, CEO and Dan Brown, Chairman
A message from our Chief Executive, Jane Jones:
It is now a year since my appointment as Chief Executive of the Gauchers Association and, in that time, I have been able to undertake a thorough strategic review of the Association to assist the Board of Trustees as they plan for the future.
Having completed my review, I think we can say with confidence and pride that the Association continues to do a great job in supporting patients and family members who are affected by Gaucher disease. However, times for charities are extremely challenging in the current economic climate and, together with the Board of Trustees, I believe that these challenges will continue for the foreseeable future. Therefore, some difficult decisions have had to be taken in looking at our structure and how the Association is resourced to continue to fulfil its objectives.
Our Patient and Family service is currently unfunded, and, whilst we are continuing to pursue opportunities for future funding, we have had to take the decision to reduce this to a part time service. It is with great sadness that we must therefore announce that Helen Whitehead will be leaving us at the end of the month On behalf of myself, the Board and all our members, I’d like to thank Helen for her hard work supporting patients and families. Her last few days with us will be the upcoming Family Fun Weekend and I am sure many of you will value having a last catch up with her then.
We know Helen’s departure will be difficult news for some of you but we will be doing our upmost to continue the support service albeit on a reduced basis. We will be appointing a new member of staff as soon as possible to fulfil this role and will make an announcement as soon as the recruitment process is finished. In the meantime, please do reach out to the Association if you are in need of our assistance and we will obviously continue to try to do everything we can to help.
Together with the Board, I have also had to carefully consider my own post as Chief Executive Officer. We believe that, at the current time, the Association is able to operate without this role. Therefore, I will also be leaving soon once I have assisted the Board in overseeing the completion of the restructuring process.
Now, on to brighter news. I am pleased to announce the promotion of Sarah Allard into the newly created position of Operations Manager. Many of you know Sarah well; she has worked at the Association for 10 years and is a huge asset to us. Sarah will be managed directly by our Chairman, Dan Brown, and some of the other trustees, and together they will drive the Association forward into a sustainable, positive future.
We are also lucky to have regained the knowledge and experience of Tanya Collin-Histed, to work directly for the Association. Tanya already sits on the Board as a Trustee but agreement has been reached with the International Gaucher Alliance to second Tanya to the Association for two days per month. Tanya’s principal role will be to provide representation for the Association at strategic meetings with the NHS, at meetings with the scientific and pharmaceutical communities and on the LSD Collaborative. We are delighted to have Tanya (back) on board to help ensure that all of our expectations of high quality healthcare services for people living with Gaucher disease will continue to be achieved.
It has been a great pleasure working with the Gaucher Community; the trustees, members and families. I have learnt a lot and leave enriched by the experience. I am sure that with the guidance of a dedicated board of trustees and with Sarah at the helm as Operations Manager, the Association will keep up the high quality services that people affected by Gaucher Disease deserve.
A message from our Chairman, Dan Brown
I would firstly like to say a massive thank you to Jane for all her work over the past year and in particular in leading the strategic review of the Association. There are many challenges that small charities face at the current time and Jane has guided us through what is a very difficult process and helped us to make some extremely tough decisions.
I also want to echo Jane’s comments in relation to Helen and again say a huge thank you to her for her dedication and commitment to the many patients and family members that she has helped and supported during her time with the Association.
The Trustees firmly believe that all of these changes are in the long- term interests of the Association and its members and will allow us to continue to represent Gaucher patients and their families for many more years to come.
As with any reorganisation, there will inevitably be some challenges over the next few months as we implement these changes and we would ask you to bear with us through this time. We will do our upmost to ensure we continue to provide the support, guidance and representation that the Gaucher community has come to expect and the Trustees are grateful that Sarah has taken on the role of Operations Manager and that she will continue to drive all the activities of the Association with her usual dedication, passion and efficiency.
If any members wish to discuss any of these changes with me, do be in touch
Jane Jones and Dan Brown