Nystagmus Network & Awareness Day

Text saying Nystagmus in the open, then the Nystagmus Network logo in the shape of an eye, then text saying Nystagmus Awareness Day 20 JuneMany people with aniridia also have nystagmus, and this year’s Nystagmus Awareness Day will take place on 20th June – the day before Aniridia Day!

The Nystagmus Network have celebrated Wobbly Wednesday in November since 2013, but this year they have permanently moved it to the summer. So the main event will be on Wednesday 20th June, and the few days either side will be known as Wobbly Week.

Sue Ricketts, the Nystagmus Network’s Information and Development Manager, told us about the charity and the awareness day at our London conference in April. You can see the video of her presentation below, along with further information about the awareness day.

The theme of this year’s Nystagmus Awareness Day is “nystagmus in the open”. Everyone is being encouraged to make the most of the time of year by getting outside and having fun together, raising awareness and funding in the process.

Activities will include barbecues, garden open days, sponsored cycle rides, sports days and lots more, so there will be something for everyone to enjoy.

Sue Ricketts will be opening her Lincolnshire garden to the public on Sunday 24 June. She said:

“I look forward to welcoming as many friends and neighbours as possible into my garden for Nystagmus Awareness Day. It will mean there are a few more people who know about nystagmus and where to find support and information.”

Cartoon image of a colourful flowery garden, with text saying Nystagmus in the open, Garden Open Day, The Barn, Fenton, 24 June, 11am to 4pm, with cakes, crafts, plants and books. Entry £3 per person, children free, sorry no dogs.

Schools and hospitals are also getting involved, with reception displays, cards and leaflets for visiting patients, and lots of bunting and balloons.

In the lead up to the big day, the charity is running its “how amazing are you?” campaign, sharing stories of adults and children who have achieved great things despite having nystagmus, or maybe even because they do.

Nystagmus Network Chairman, Richard Wilson OBE, said:

“We are very excited about the new date. I have a feeling this is going to be one of the biggest Nystagmus Awareness Days ever.”

Details of how to get involved are on the Nystagmus Awareness Day page. For more information, please contact Sue Ricketts by emailing sue.ricketts@nystagmusnet.org or calling 01427 718093.

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Paul, aniridia and sports

Mixed ability teamI was born with aniridia and did the usual sports at comprehensive school. I was the only disabled person there never mind the only visually impaired pupil there. I never really liked playing rugby, football or cricket for the obvious reasons and lack of confidence, despite loving to watch the football on the telly and listening to the cricket on the radio.

After attending the Royal National College for the Blind in Hereford, I gained a bit of confidence from doing judo and karate. I also discovered parasport such as 5-a-side blind football.

I knew very little of the VI cricket scene until a few years ago when I went to a session that was set up by couple of people, from the Wolvhampton and Staffordshire. I loved it and still do, but now playing in Worcestershire).

Hugby players and coachesPeople at Worcester Warriors Rugby Club are trying to develop an adapted version of rugby for the visually impaired/blind community called hugby. You tackle someone with a big friendly hug. I love this idea and it’s keeps being developing with ideas from both coaches and players.

Recently a group of us with various disabilities including several of the hugby players went to Scotland to have a go at mixed ability rugby. I can tell you that as a person who was born with sight problems and from people who have lost their sight for whatever reasons over their lives, we loved it. Three of us had problems with too much light but I was the only one with aniridia.

So if you want to try sports because you love sport or want to keep fit or just to meet new people and have fun, search in your local area for sports that have been adapted for people who are visually impaired/blind. You never know, you may win gold in the next Paralympics or Commonwealth Games!

By Paul

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Clear out raises over £35

A stall under a gazebo in front of a Victorian terraced houseLike everyone, we’ve got stuff in the house we don’t really need. So as part of a neighbourhood event we held a jumble sale in front of our house.  The proceeds were split between our two favourite charities.

Once we had sold a step ladder, locks, books, picture frames and more we had made £23  for Aniridia Network.

I then went on eBay to sell more stuff. There I chose the option to give a portion of  each sales to Aniridia Network too. So far that’s raised more than £5.

This is in addition £7 I’ve made for the charity in 2018 merely by using Give As You Live whenever I’m shopping online, including Amazon or for groceries.

Every little helps so please do your bit too!

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Half Marathon Fundraiser

Collage of 3 photos of Katja - one with her running, one posing with her daughter Tina, and one with her smiling and giving 2 thumbs up. In all the photos she's wearing the Aniridia Network UK t-shirt.Katja Lumezi’s daughter Tina was born with aniridia, and from the moment she was diagnosed they have received “immensely valuable” support from the Aniridia Network and Moorfields Eye Hospital.

To show their gratitude and raise money for the Aniridia Network, Katja will be running in the Hackney Half Marathon on 20th May 2018. We are delighted and very grateful to her for doing this.

You can sponsor Katja on her JustGiving page. She will be thankful for any donations you can make. Remember to include Gift Aid if you are a UK taxpayer, as this increases the donation at no extra cost to you.

We’d like to wish Katja the very best of luck for the Half Marathon, with many thanks to her and Tina for supporting us in this way. We look forward to sharing an update after the event.

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PAX6 and the Cornea: An Eye to the Future

Thanos giving his presentation at the conferenceOne of the speakers at this year’s conference was Thanos Papadimitropoulos from University of Liverpool. He told us about his team’s research, funded by Fight for Sight, into a potential new therapy that may one day be able to slow down or stop the progression of aniridia.

His talk got a positive reaction from the delegates, and afterwards he took the time to discuss his research further with those who wanted more information. One said: “When I spoke to him at lunch, he clarified things and was extremely helpful.”

Below you can see the video of Thanos’ presentation, followed by his written review of the day. For more information about his team’s research, please visit their blog, where they will post updates as the study progresses.

Review by Thanos Papadimitropoulos

Recently I was invited to take part in the annual conference of Aniridia Network UK. There, I was given the opportunity to present the work we undertake in Liverpool University, alongside Dr. Kevin Hamill and Prof. Colin Willoughby, developing a therapeutic tool for Aniridia Associated Keratopathy. It was revitalising (and somewhat intimidating) to be able to communicate my research to the people who my work focuses upon, those affected by Aniridia rather than my usual audience of research scientists and clinicians. I certainly got a lot out of it, and I hope the audience appreciated it too!

From my day at the meeting, it is evident that a tight community is being formed around people that are or will face similar difficulties and challenges due to their eye condition. A lot of work is being done from the organisers to keep people informed and up to date with all the different aspects of Aniridia. And, maybe more importantly, form a network that provides emotional support and the chance to make new friends. If you are reading this as a patient I encourage you to check out the network.

Coming back from a conference that is organised not by big pharmaceuticals or academics but by the patients, and for the patients, helps put some things that I am doing into real-world perspective. Although the final aim of our work is to develop a therapeutic tool for AAK, speaking with patients also provides us with knowledge and ideas of how we can ease the burden of the people affected by Aniridia. It’s easy to see our work as cells in a dish or even pieces of RNA but the implications on quality of life and what matters to the patient is key to our research going in the right direction. We can’t underestimate the ideas that we gain from these meetings, ideas that we will soon start to put in motion.

A big thanks go to the organisers for a flawless conference throughout the day and to the people that showed an interest in our research and were really friendly throughout. This was my first time speaking at one of these meetings and I couldn’t have been made more welcome. It really was inspirational and informative to get a chance to interact with everyone.

I think my closing remark on my presentation probably sums up the most important thing I took with me from the conference.

“We, scientists, tend to lose ourselves in the labs, or with our faces stuck against our computer screens. It is nice to be reminded WHY we do WHAT we do, and for WHOM.”

Thank You

Thanos Papadimitropoulos

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Annual Reports 2016-2018

Seated audience and a guide dog laying on the floorDetails of what our officials did between April 2016 and March 2018  are in the Aniridia Network UK Annual Reports for 2016/17 and 2017/18 (pdf of PowerPoint).

There is also the Aniridia Network UK Financial Reports for 2016/17 and 2017/18 (pdf)

These were presented at the Annual General Meeting on 14 April 2018.

The reason for this covering two years is as follows:

  • At the 2015 AGM members voted to dissolve Aniridia Network UK unincorporated association (ANUK UA), and create a new one to allow us to register as a charity
  • Implementation was delayed until autumn 2017 and there was no AGM in 2017 partly due to the handover
  • Aniridia Network, a Charitable Incorporated Organisation (CIO), was created and registered by the Charity Commission for England and Wales in January 2018 by the incumbent trustees
  • The first Annual General Meeting of Aniridia Network CIO was held on 14 April 2018

ANUK UA will now be formally dissolved and the assets transferred to AN CIO by the trustees.

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Our first grant for UK research into aniridia

Man pointing at projection showing a large eye

We are thrilled to announce a grant for research into aniridia!

Aniridia Network UK has partnered with charity Fight For Sight to each contribute half the money to a £15,000 grant.

The money is only available to UK academic or medical institutions.
Get more details about and apply for the grant
.

Applications must be made by 5pm on Tuesday 27 March 2018.

Chair of Aniridia Network UK Trustee Board and Head of Knowledge and Services Katie said

“This is the first time we have offered a grant of any kind. It is a very exciting milestone for us and chance to make a big impact. I do hope that we will be able to offer more awards focused on aniridia in future.”

Please share this opportunity with any eye doctors you know so we can get the best ideas submitted.

Let us know in the comments below what you think should be researched.

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1,000 Miles in 200 Days Fundraiser

Laura Cartmill standing on a football pitch, wearing a purple t-shirt and shorts, smiling as she holds a silver trophy in one hand and a gold medal in a square red case in the other hand.Laura Cartmill has aniridia and autism, which naturally presents challenges for her everyday life. But she hasn’t let her impairments get in the way of her ambition to achieve and inspire.

For example, she plays football at the Torquay United club for people with disabilities, which has helped her confidence to grow tremendously since she joined in 2012.

And now, at the age of 27, she is embarking on a fundraising challenge to raise money for Aniridia Network UK.

Laura is aiming to walk 1,000 miles in 200 days, walking 5 miles a day. The challenge will start on 30th July 2018 and end on 15th February 2019. Laura says she is doing this to help others achieve in similar ways.

She is aiming to raise £500, and would be very grateful if you can sponsor her and donate via her Just Giving page.

A big thank you to Laura for doing this for us, and to everyone who supports her. We wish her the very best for the challenge!

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Notice of 2018 Annual General Meeting

Notice is hereby given to members that the first Annual General Meeting of Aniridia Network, a charitable incorporated organisation  will be held at:
Resource For London, 356 Holloway Road, London, N7 6PA
on 14 April 2018 at 10:40am to transact the following business below in accordance with our governing document.

Agenda

  1. People at tables watching a speaker at a podium and others seated as a panelAniridia Network UK Annual General Meeting 2016 minutes to be agreed
  2. Matters arising.
  3. Reports & Accounts (tba)
    To receive and consider the accounts for the years ended 2017 and 2018 and the reports of the charity trustees
  4. Any resolutions received.
  5. Appointment of charity trustees
    To (re-)appoint the following (tbc) as trustees until the 3rd AGM after this one,  subject to the compulsory retirement of 1/3 of trustees by rotation at each AGM as described in the charity’s governing document: Katie AtkinsonJames Buller, Martin Fleming, Emily Nash, and others who may be nominated (see below).
  6. Consultation on the foundation model for governance of the charity.
  7. Any other business.

By order of the Trustee Board

Proposed resolutions should be emailed to the trustees by 10am on 12 April 2018

The AGM 2018 will be a session at Conference 2018. Members may come to the AGM for free but to attend other sessions the conference ticket fee must be paid.

Join the Trustee Board

Trustees are the volunteers who form our governing body. They work as a team and are collectively responsible for controlling the management and administration of the charity. Being a trustee can be hard work, but also be very rewarding and provide great opportunities for personal development and improving your employability.

Interested? Find our more about being and how to become a trustee.

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Charity registration achieved

From today Aniridia Network has full charity status.

This is excellent and exciting! It means we have more potential to get funds and support, leading towards being able to do much more.

Previously we were only registered with HMRC as a charity to let us claim Gift Aid on donations.

For many years we’ve wanted to register with the Charity Commission, to get the talisman of a proper charity number and all that brings. However until recently we were not big enough to qualify and didn’t have the time to work on it. That’s now changed.

The Charity Commission accepted our registration to be a charitable incorporated organisation. This took a lot of preparation work by trustees. It also required a vote at the annual general meeting in September 2015. There members voted for a process that would technically close the existing association and create a new one that could register as a full charity. As part of this we have also dropped the ‘UK’ from our name.

The 2018 annual general meeting at this year’s conference will therefore be the first for the new organisation. You can read the new Aniridia Network CIO governing document.

 

 

 

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