The day has finally arrived for the International Cholesteatoma Association to officially exist. Companies house in the UK have completed the process and a company number has been issued. This is an exciting time for everyone involved, and we hope that more people will join us in our aim to provide information and support to those with cholesteatoma. The website is being tweaked and should be ready to launch very soon.
I have finished creating the shell of the website and now I am looking at a new logo to reflect our international focus. Thanks to all the people who have volunteered; there is much activity happening behind the scenes. Jo is looking at data collection and analysis. Dawn has volunteered to be our treasurer. Adam is going to add the forum function to the website, and look at correcting any website development mistakes I have made! Leslie has read all 500 pages of the latest research and is going to start summarising. Donna is going to write up some tinnitus advice. My next step is to look at setting up a voluntary group and opening a bank account to hopefully collect the funds raised by people on the ctoma website facebook page. We are also planning on approaching Mr Hamilton to ask him if he will be our clinical advisor. Once the information sheets have been written and approved by an ENT consultant, the website can go live!
We are launching our first fundraising appeal.
In order to send some of the management committee to the next International Cholesteatoma conference, we need to start fundraising today. The conference is in June and we will need to raise about £2000.
Our objectives in attending the conference will be to network with ENT consultants and find those who are keen to provide information for our website. We will also be raising the profile of the website so that the consultants can inform their patients.
Welcome to our first blog AND our first ever support group meeting. From small acorns big oaks will grow, and we are hoping that our easy to use toolkit will encourage more of you to set up a support group near you. All you will need is enthusiasm and we supply the rest!
The very first support group meeting of Cholesteatoma UK is set for 4th November in North Wales. Anyone who is within driving distance is more than welcome to attend. The group aims to meet bi-monthly so get in touch for the next meeting date.
We look forward to hearing from you!