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AGM and Speaker Meeting

Our next London meeting will be held on Saturday 22nd March at 11 am

The venue is at the Moorfields Education Hub, 1st Floor,
15 Ebenezer Street (the hub is opposite Moorfields main hospital — cross City Road and go up Provost Street to the next corner and the Hub is facing you on the left).

Our guest speakers are
Dr Ahmed Abass and Lynn White.
They will be updating us on their project to make special spectacles for those of us looking for temporary relief from contact lenses. Their talk is titled
Non-orthogonal spectacle correction for irregular astigmatism
You can read more –here.

All are welcome, both people with KC and family members. As usual, there will be a buffet lunch and an opportunity to meet others with KC.

Do let us know if you are coming by emailing anne@kcgroup.org.uk or ‘phoning her on 020-8993 4759 so we can cater for numbers. If you are unsure whether the meeting is for you, please give Anne a call.

Note to Optometrists and ECLO’s – Please help us publicise this event by downloading and displaying a copy of this poster

Formal documentation for the AGM are available here:

Chairman’s Report
Agenda
Minutes of last years AGM
Accounts for the year ended 31st August 2024 – To follow

    KC Zoom Meeting

    The Next Meeting – Tuesday 11th March at 7:30pm

    Our zoom meetings provide a good opportunity for those newly diagnosed to meet seasoned travelers and discuss all things KC. Anyone with an interest in Keratoconus is free to join us.

    To take part, simply send an email to david@kcgroup.org.uk to request a link.

    Please join us to discuss all things KC. We are totally open with no pre planned agenda. Ours is a truly bottom up organisation run by members, all of whom have KC or a close connection. There are no silly questions. If you are thinking it, then there is sure to be someone else with a similar idea.

    We hope to see you then.

    Spectacles for KC Research update 2

    If you have been following this topic, you would have seen our earlier posts here and here

    We are pleased to report that Dr Ahmed Abass has published his paper which we are proud to have co-sponsored with Fight for Sight.

    Dr Abass has kindly provided the following simplified abstract. The full paper can be read here. You can also view his other papers on his University Page here

    Purpose

    The study aimed to investigate whether non-orthogonal correction in spectacles would improve the visual acuity of people with keratoconus. Non-orthogonal correction is where the angle between the cylinder powers of a spectacle lens for astigmatism is less than or greater than 90 degrees. Typically, keratoconus patients have this type of astigmatism, which is why standard glasses do not work well.

    Methods

    The study involved 18 patients with keratoconus from an eye clinic in Liverpool. After evaluating their eye condition, 23 eyes were selected for testing, while others were excluded due to the eye having little or no keratoconus or severe dryness. Each eye was tested first with standard lenses, and then with non-orthogonal lenses. The lenses were tested with different angles until the best one was found for each person. Participants were asked to rate their vision, specifically how clear letters appeared and how much “ghosting” (double vision) they experienced with each lens type.

    Results

    Of the eyes tested, 61% showed improved vision with non-orthogonal lenses, 30% saw no change, and 9% saw a slight decrease in vision. Regardless of vision improvement, 87% of participants noticed clearer letters, and 79% reported less ghosting. Most of the preferred angles for the non-orthogonal lenses were between 80° and 85°. The study also showed that for many people, the non-orthogonal lenses could provide a more accurate prescription compared to regular lenses. Nearly all participants said they would be interested in trying non-orthogonal glasses.

    Conclusions

    The study suggests that non-orthogonal lenses could improve vision and reduce issues like ghosting for people with keratoconus. While this is a promising step toward developing better glasses for these patients, more work is needed before these lenses can be made for everyday use. 

    We are hoping to arrange for Dr Abass to speak at one of our future events.

      World Keratoconus Day

      World Keratoconus Day is fast approaching on 10th November. We would love to hear from YOU! We are keen to support NKCF who this year are inviting everyone touched by keratoconus(KC) to join their 2024 World KC Day Contest – whether you are living with the condition, a supportive family member, friend, or an eye care professional who treats or studies KC. Share your unique story or perspective to help raise awareness and connect with others in the keratoconus community.
      We encourage you to express your experience in a creative way.

      Here are some options to get started:

      How you can share:
      Create a short Video
      Write a poem
      Design some digital artwork
      Compose an essay
      Or use any other medium that feels right for you

      Ideas for what to share
      Describe how keratoconus has impacted your life – both the challenges and the victories. A heartfelt thank you to someone who has supported you along the way. Giving a shout out to an eye care provider who has made a difference. Sharing your personal KC journey

      Eye care professionals:
      Why are you passionate about treating those with keratoconus?

      Feel free to share anything else relating to your KC experience.

      Your submission will be reviewed by representatives from NKFC, Keratoconus Barbados, Keratoconus Australia and the UK Keratoconus Group

      Winners will be announced shortly after World Keratoconus day on 10th November 2024.

      We can not wait to hear your stories and celebrate your creativity!

      To learn more or submit your entry, click below:
      World KC Contest.

        Open Sight Hampshire

        Wednesday 18th September 2024 Opening Times: 10am – 4pm

        The KC Group will be represented at the “Eye Contact” event hosted by Southampton Football Clubs’ St Marys Stadium, Britannia Road, Southampton, Hampshire, SO14 5FP. 

        Rated one of the top eight Exhibitions in the country and the biggest of its kind in Southern England, Eye Contact will host a number of leading businesses and community services to showcase the very latest aids, equipment, information and services

        If you get the opportunity to visit, please stop by our stall and say hello.

          Eye Can Bristol 2024 Exhibition

          The Eye Can Bristol Exhibition is fast approaching! We will be there to share information about what we offer, we hope you can make it.

          Come along and listen to some fascinating talks from guest speakers, Amar Shah – leading optometrist, Yahya Pandor – renowned advocate for the blind who will be sharing his story or try Ignite Bristol’s seated low intensity exercise taster session.

          Have a wander through a diverse range of exhibitors and find out about the latest in tech, products and services for anyone living with sight loss.

          The Eye Can Bristol Exhibition will be taking place at BAWA Health & Leisure Club, Southmead Road, Bristol, BS34 7RG, on Wednesday the 9th of October 2024 from 10 am to 3.30 pm (last entry 2.45pm).

          This event is hosted by Sight Support West of England and is sponsored by Optelec and Humanware.

          Entry is free and you can book your place by visiting the Eventbrite booking page (Here) or contacting Sight Support directly on 0117 322 4885.

          If you get the opportunity to visit, please stop by our stall and say hello.

          https://EyeCanBristol2024.eventbrite.co.uk

            New eye hospital for Edinburgh

            Sight Scotland has organised a petition for a new eye hospital in Edinburgh to replace the existing one, which is crumbling away. The following is a quote from their website:

            The Scottish Government’s 2024-25 budget made no mention of a new eye hospital – despite the current building being declared unfit for purpose in 2014.

            10 years later, and we’re still no further forward.

            A new eye hospital in Edinburgh was promised by the Scottish Government in 2018, yet 5 years on, the opening has been delayed further. 

            The Scottish Government withdrew funding from the project in December 2020, and have since flip-flopped back and forth on their commitment to it. In 2021, former First Minster Nicola Sturgeon declared it would go ahead but gave no timescales for its completion.

            Over 180,000 people across Scotland are estimated to live with sight loss and this number is set to grow. Every single one of these individuals deserves access to quality eye healthcare. We can’t wait any longer.

            Show your support and sign the petition for a new eye hospital.

            In Memoriam Mike Oliver

            It is with great sadness that we announce the death of Mike Oliver, co-founder of the Keratoconus Group, long time trustee and ex Chair of the trustees. Mike’s contribution to the creation and development of the KC Group was immense. His ideas and ambition for what it could become were an inspiration to the rest of us. It was thanks to him that what started as some meetings of KC patients in Moorfields became a national charity. It was Mike who persuaded us that, in addition to our programme of meetings for members, we should also hold a one day conference, inviting a variety of speakers. The first successful conference in London in 2001 led to (so far) nine more in London, Birmingham, Glasgow and Manchester. It was Mike who had the idea of fundraising walks for the charity with members joining as and when they could along the way. The first of these was walking the length of the Thames Path from the source to London. Mike planned the route for each day and walked the entire route (the only one of us who managed to walk every day of the fortnight)! A couple of years later he organised the equally successful Capital Ring walk. He gave generously of his time to the charity and worked tirelessly to spread awareness of keratoconus and its effects on physical and mental wellbeing. That included the last two years when he was already ill but, despite that, gave a very moving talk at our 2022 conference, you can view it – here. Perhaps it was his legal background that made him such an eloquent speaker and a great problem solver. But, of course, apart from all his achievements, we’ll remember Mike above all for his warmth and kindness, his ability to listen and empathise, his dedication to others. We will miss him hugely.

            If any of his KC friends would like to attend his funeral, please contact anne@keratoconus-group.org.uk for details. 

            KC: Through My Eyes

            A Photography Contest for the International Keratoconus Community

            The US-based National Keratoconus Foundation (NKCF), Keratoconus Australia, and the UK-based Keratoconus Group invite anyone connected to the keratoconus (KC) community to share how KC affects perspective using photography. Patients, friends, family members, and eye care professionals are invited to participate. The objective of KC: Through My Eyes isn’t simply to collect creative images, but to help tell a story of how KC impacts daily life. The photo can focus on the challenges, express how obstacles are overcome, or share an appreciation for beauty that may be otherwise overlooked.

            You can find details on how to enter – here

            Wiltshire Eye Can Exhibition

            The KC Group will be represented at this exhibition on Wednesday the 11th October 2023, 10am to 3.30pm at Steam – Museum of the Great Western Railway, Fire Fly Avenue, Swindon, SN2 2TA. Working with local and national partners, the exhibition is designed to give local people a chance to come along and discover everything available to help them regain or retain independence. This Eye Can exhibition is part of a series of exhibitions held on a yearly basis and to date has had almost 200 visitors at each event.

            Wiltshire Sight is a charity that supports blind and partially sighted people living in Wiltshire and Swindon. Our aim is to ensure our clients have the tools they need to lead fulfilling and independent lives.