Back up and running

The last few months have been a little hectic and I haven't had the chance to post updates on my blog.

I've also been having issues signing into my Gmail account, so I apologise to those that I haven't responded to!

I'm now back up and running and will be responding to all emails.

I also hope to arrange another fundraising event this year so look out for the posts!

Keratoconus research update

I recently received amazing news that the research myself and Barbican Insurance helped to support has been accepted as a presentation at the American of Ophthalmology. It has proven to be an exceptional piece of work that will open many new avenues for study and potentially for treatments.

Moorefield’s are also finalising their collection of over 3000 samples from individuals with keratoconus for submission as the largest genetic study ever published in keratoconus. This is a once in a generation opportunity, with collaboration between a number of international centres.

This has proven how important the Keratoconus Fundraising is that I’m supporting. The more we continue to raise awareness, the more samples can be added to this study, which will increase the power of the study!

The fundraising will continue and I’ll never give up, the more support I can get behind me the better!

We are in control of keratoconus, it will not control us!

 

4 years on...

 

Nearly this time 4 years ago I had CXL treatment on both eyes, a year after I was advised that the condition had stabilised however I had not been contacted for a check-up since. I decided to get referred to Moorfield’s Eye Hospital as they have a clinic for those who suffer with KC and ensure patients are seen annually.

 

I received the great news that the condition has not progressed and after having CXL it should be stabilised. There are no answers to how long CXL could stabilise keratoconus, for all we know it could be forever!  

 

Whilst waiting to be seen by an optometrist, I was invited to take part in the clinical and genetic basis of keratoconus research study. I was advised this would be voluntary and all that would be required is an eye examination (which I was in the middle of having done anyway) and to give a 20ml blood sample. The laboratory will extract the DNA from the cells in the blood sample so that it can be used to study the genes.

 

Research has shown that genetic factors have an effect of the risk of someone developing the disease and this study would give the opportunity to see if genes that affect the risk of keratoconus could be found.

 

So far, just over 2,000 patients with keratoconus have volunteered and once they have 3,000 patients DNA the study will be carried out.

 

Finding the genes is a major challenge and may take many years but to speed up the research they may join forces with other research teams in the UK or abroad.

 

When receiving this invite, I did not hesitate once and accepted to become a volunteer immediately. We are in control of keratoconus, it will not control us!
 

 

Lloyd's Charity Awards

 

 

On Wednesday 14th December I was lucky to collect a Lloyd's Charity Award.
 

The Lloyd's Market Charity Awards are donations to charities supported by individuals from across the Lloyd's market. The awards are run by the Lloyd's Charities’ Trust, a grant making charity which provides charitable donations on behalf of the Lloyd's market.
 

Donations are given to charities supported by individuals working in the market in recognition of their fundraising and voluntary work, and to charities that have given invaluable support to those in the market whose lives have been affected by difficult circumstances.
 

I nominated the Keratoconus Self-Help and Support Association for a £2,000 award and out of 60 applications I was very lucky to have been selected amongst 29 other inspirational causes.
 

I invited two members of the charity (Anne Klepcz and Dave Gable) to the ceremony, who found it an inspiring experience and fascinating to see the inside of the Lloyd's building.

 

Since October 2013, when I started fundraising for the Keratoconus Self-Help and Support Association, with a huge support from Barbican Insurance, by the end of 2016 we would have raised a total of £22,500. This has had a huge impact, with the charity being able to approve a grant for research at Moorfield's Eye Hospital. We will also been continuing our support so the charity are able to approve more research going forward.
 

 

WORLD KERATOCONUS DAY!

Today is the first World Keratoconus Day organised by The National Keratoconus Foundation in the US. Their aim is to spread the word all over the world. #WorldKeratoconusDay

 

So today, I'm spreading the word by celebrating and announcing that on top of Barbican Insurance providing the Keratoconus Group (UK charity) with £7,500 this year, I've also received a charity award from Lloyd's of London with a donation of £2,000! In 2012 the charity had only received about £5,000. By the end of this year, we would have donated a total of £22,500!

 

Our fundraising has helped in many ways but one thing that really stood out to me is that the charity has been able to accept a grant for research at Moorefield's Eye Hospital this year (images below), in hope to find the cause behind this awful condition. The fundraising can't stop here, the more we raise, the more support we can give!

 

On a day as important as today it would be amazing to see more donations. Please click on the link below to donate: https://www.justgiving.com/kshsa

 

It doesn't matter how big or small, anything would make a difference to such a small charity.

Thanks to everyone who have donated so far and especially to Barbican Insurance for all of their support.

 

 

Keratoconus for life

Keratoconus is a condition for life until we're able to find a cure.

So I thought I would get something else for life...

I designed a symbol that would have a meaning behind this condition - A twinkle, it could represent a star to some of you but to me it's a twinkle of the eye. I might have an eye condition not known by many but I'm lucky to currently have this condition under control, others haven't been as lucky and I'm hoping this will become a trend for those who suffer.  

Keratoconus Group 25th Anniversary Conference

Thanks to all the fundraising efforts so far the KC group were able to organise their largest event this year which I attended on Saturday 17^th September.

The Keratoconus Group 25^th Anniversary Conference was organised for members which celebrated 25 years since the very first KC Group support meeting and 20 years since they became a registered charity.

Mike Oliver (Chair of the charity) had made a couple of funding applications to help cover the costs of the conference however the money that I’ve raised together with Barbican Insurance had contributed significantly. The members of the KC Group could not thank me enough at the conference and said our fundraising has helped enormously.

It was also announced at the conference that the KC Group were able to approve a grant for funding a research project that is part of a larger programme of genetic research into Keratoconus, led by Stephen Tuft, corneal consultant at Moorfields Eye Hospital. It was mentioned that in previous years, the KC Group would have had to say no to a request like this, but thanks to our efforts, they have been able to approve the grant. I’ve also been given the opportunity to visit the research facility at Moorefield’s Hospital.

It was amazing to hear that our fundraising efforts have had a huge impact for the KC Group and we will continue with our support.

There were some great speeches from professors, ophthalmologists and members themselves who helped support others who are suffering.