Overview of 2020

Given the world we’re currently living in and not knowing when normality will be back, David Gable (Chairman of the Keratoconus Self-Help and Support Association), organised a Zoom call in June 2020. 

There were only 6 of us, but we wanted to see how it would go. This was to replace the committee meetings that were taking place at Moorfields. We didn’t want the support network to disappear because we were in the middle of a pandemic and this was the time more support than ever was needed. 

The first call was a success, so David organised another in August 2020 and started advertising them via the website. There were at least double the amount of attendees the second time round and this is when we realised there was a big interest. 

This led on to us arranging these Virtual Coffee Meetings monthly with a topic focus on each call. I then started advertising the calls via Instagram and from this we have found more KC sufferers looking for help! 

So far we have hosted calls to discuss ‘Ghosting’, Help at Work and Collagen Cross Linking (CXL). 

Anne Klepacz (Secretary of the Keratoconus Self-Help and Support Association) kindly typed up some great notes from the last two Virtual Coffee Meetings, which I will publish in separate posts. 

If you were unable to attend these calls, we hope these notes are helpful. We are also open to topic ideas, so please get in touch if you need any support from us! 

Overall fundraising efforts

The fundraising activities you see published in this blog have gone towards the UK Keratoconus Self-Help and Support Association and has enabled them to remain solvent and make some valuable donations. 

Prior to the fundraising efforts from myself and the company I work for, they ran on a very unreliable income stream, which only just about covered their printing and postage costs. During the early stages of the fundraising the funds went towards the 2016 conference, for which they did not receive a lottery grant for. It also enabled them to contribute funds to the Moorfields/UCL Genetic study. Since this time, they have been funding the training of 4 NHS optometrists in the specialist fitting of Sclaral lenses and have contributed a further two small grant awards in partnership with Fight for Sight who matched their contribution. The first award in 2018 was into the relationship of corneal nerves and KC and the second in 2019 was towards the development of specialist spectacle lenses to reduce the reliance on contact lenses. 

They ended up receiving a lottery grant and their finances are in a much better state than they expected. They also now continue to receive funding requests from others.