Goggles and aniridia

Underwater photo of boy swiming with screwed up eyesSwimming is a very healthy and enjoyable activity, but with reduced vision and highly sensitive eyes due to aniridia, regular goggles may be of limited use.

Children, for example, may find it difficult to see their instructors in swimming lessons. And adults may be reluctant to go swimming if they feel goggles restrict their field of vision and fail to reduce glare.

The solution for many is to get goggles that are tinted or polarised or have prescription lenses. And there are various places you can look for these.

A local high street optician may be able to help or advise you, and there is no harm in asking. However, there is no guarantee they can supply them, and even if they do the cost may be prohibitive.

So it is worth shopping around further. For example, one parent on the Aniridic Family Facebook group recently shared her own experience:

“My daughter is a keen swimmer and was finding it hard in her lessons to see what the instructor was doing (the instructor always goes up close to show her). However, there are times where she can’t see what to do with normal goggles on. We went to Specsavers and they said there was a chance they can’t do it, or it could cost between £75-125.

After trailing the internet I came across a site called Prescription Swimming Goggles. I got my daughter a pair of mirrored ones. These are for outdoor swimming, but having just got back from Spain they were a godsend. My daughter’s swimming has improved dramatically, so much so that within 2 weeks she received 3 badges and was moved up a group. To make it even better they only cost me £25 and were delivered in 3 days. I even got myself a pair.”

Various other websites have also been recommended by people with aniridia and parents of children with the condition:

Speedo Goggles are made by the famous swimwear and accessories brand, and include coloured lenses and prescription goggles.

TYR Goggles have a wide selection available, including polarised lenses, and a Swimple range for children. Their international site even allows you to customise Swimples and other types of goggles in various ways.

Aquasphere Goggles are available for children and adults, including polarised lenses.

We also recommend searching for the “goggles” in Aniridic Family to find out what others have to say.

Underwater photo of boy wearing a scuba mask

 

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Inspired to study aniridia for a degree

Eve

Eve

In February this year I started the final module for my degree, a literature review of the latest research in my chosen topic. Suggested topics included stem cells and human senses (among others). I wanted to pick something that I could relate to on a personal level, knowing it would motivate me to do the best I could – so I chose aniridia.

I chose it because of my cousin, Allyn, who recently wrote a blog post about his aniridia and depression. Up until very recently, I didn’t know what it was. I knew he had trouble with his eyes and had undergone many surgeries. I knew he’d had stem cell therapy and a corneal transplant, but my knowledge ended there and I decided I wanted to know more, at a scientific level.

Al

Allyn

Growing up with Allyn, as part of a large family, I didn’t think of him any differently to any other cousin – he was loud, energetic, loved pizza and was pretty annoying on times. In recent years, when I realised how progressively worse his eyesight had become I wished and prayed for him to regain his sight, so he could live his life to the fullest. As a family we sat and awaited the news of how his latest eye surgeries had gone – when I heard that it had improved his vision and he told his sister “You’re just as ugly as I remember” (that’s our family’s humour for you!) I both laughed and cried, feeling overjoyed for him and hopeful.

So, I began my research. It was extremely obvious very early on that anirdia in its entirety was too large a topic. With the condition affecting multiple parts of the eye and me being restricted in my word count, I decided to solely focus on the cornea. I began looking at the genetic cause of aniridia and came across the term WAGR. Suddenly, everything clicked into place and made more sense. I remember my nan telling me that Allyn had had kidney cancer when he was a baby – she told me as she looked at the picture on her wall, of Allyn and his parents meeting Princess Diana on the hospital ward. I didn’t understand back then, but now I did and I cried. I cried for all he’s had to go through and I felt bad that I hadn’t sought to understand sooner. From this point onwards everything took on a new level of meaning for me.

In April I went to the Aniridia Network Conference in London and was delighted to hear Mariya Moosajee talk of her research – the very stuff I had been reading in isolation, at home. I looked around me seeing the wonderful support network created by those with aniridia. The dad of a young girl told me about how he practically diagnosed his own daughter with some basic knowledge of biology and the use of the Internet! I spoke with a mum who had travelled from Russia and heard about her efforts to support those in her care. I was inspired! Mariya also mentioned the drug Ataluren, a nonsense suppression therapy which I had just been reading about, currently in phase 2 clinical trials (expected end date of December 2019). After spending so much time reading about the low success rates for corneal transplantations, this seemed so hopeful. I was both excited about the prospects of the research but also saddened for those that it would not benefit – those without aniridia caused by nonsense mutations, such as Allyn.

Seated delegates at tables, watching a presenter and big screen

As my ‘project’ developed I became increasingly obsessed – seeking the best way to bring the information together and consolidate what I’d found. In the last 4 weeks of writing my review, my grandmother sadly passed away quite suddenly, leaving me distracted. Having started a new job that same week I became quite disheartened with my progress. I felt forced to reduce my scope and submit a piece of work that was not to the standard that I would have liked. I felt like I had failed myself and was letting down my family for not producing work of a high enough standard.

Well, the results came in last week… I was awarded a distinction for my work! Obviously I am happy with this, but more importantly, this project has helped me realise that I want a career helping others. I don’t think I’ll have a career in ophthalmology, but whether it be in research or something else, I want to help improve the lives of others by what I do.

Thank you, Allyn, for being my inspiration, my motivation and for the emotional support you have given me over the years. You were my shoulder to lean on when I needed it and I am so proud of you, for all that you have endured and achieved.

This post was reproduced from Eve’s new personal blog with her kind permission. Aniridia Network wishes Eve congratulations for her results and thanks for her contribution. We are looking forward to working more with her to improve understanding of aniridia.

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Orbit abseil fundraiser

James abseiling down the tower, which has lots of curving red girders and a helter skelter slide going around it. It is a free-fall abseil, so the rope has taken James diagonally away from the tower as he goes down in mid-air.Today I took a big leap to raise £1070 for aniridia. I abseiled 80 metres (262 feet) down the Orbit Tower in London.

It was organised by Moorfields Eye Charity, and I was very keen to take on the challenge. As I explained on my fundraising page:

“Every year I go to the world renowned Moorfields Eye Hospital for a check-up. As well as expert doctors behind the scenes, there are brilliant teams investigating possible treatments to preserve or improve the sight of people with aniridia. I’ve met many of them and heard of the amazing progress they have made.

I’ve even provided my eyes for their experiments. I’ve seen the huge difference these medical advances make too, personally with my recent cataract surgeries and from meeting fellow patients. Now I can help financially too.”

I decided to split the proceeds between Moorfields and Aniridia Network.

To get encourage sponsorship I posted a video on social media of me ‘abseiling’ from our loft as ‘practice’!

The big day was beautifully sunny. The ArcelorMittal Orbit is the equivalent of 26 storeys high, giving stunning views across the Olympic Park, including the stadium and aquatic centre with the London skyline stretching far into the distance.

James leaning back off the platform with blue sky and skyline behind him

Moorfield fundraising officer, James and another abseiler posigI was cheered on by my family and friends, volunteers from Moorfields Eye Charity and other abseilers (including Aniridia Network member Glen Turner, who was raising money for nystagmus research). The staff at the ArcelorMittal Orbit Tower and the abseil company Wire & Sky were very friendly, easing everybody’s nerves.

So with everyone’s support, I was able to nervously lean back, then step off the edge to enjoy this incredible experience. It’s known as a freefall decent because there’s no structure to follow down. I just hung in mid-air and let myself down.

James and another abseiler haning in mid air alongside the red girders of the Orbit tower

Immediately afterwards I said

“It was brilliant – a bit tense at first and then excellent fun. It was an awesome view and so quiet when hanging in mid air. Such a big thrill!”

A massive thank you to everyone who so generously sponsored me and spurred me on. In total, I raised £641 for research into aniridia at Moorfields Eye Hospital and £328 for Aniridia Network activities. This will make a big difference to many people’s lives, Thanks and congratulations as well to Glen and the others for also completing the challenge and raising so much!

If you get the chance to do this or another feat I thoroughly encourage you to go for it.

James standing at the foot of the tower, smiling with his arms raised

Celebrating victory after completing the abseil

 

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Five go to Paris for European Conference on Aniridia 2018

Five members of Aniridia Network travelled to Paris for a conference about the science and treatment of aniridia. They met the world’s top experts on aniridia and learned about their latest research and techniques. They also took part in a meeting of Aniridia Europe.

Group photo of the General assembly of Aniridia Europe

General Assembly of Aniridia Europe

The event was the European Conference on Aniridia. It showcases the latest scientific research, potential surgical procedures and drug treatments for aniridia.

It is primarily for doctors and researchers to meet and present their work to each other. It encourages debate, collaboration and sharing of knowledge. Patients and others interested in aniridia also attend. Together they form a winning community with the goal of finding effective long-term methods of fighting sight loss and other difficulties caused by aniridia.

The panel of experts seated on the stage

The conference is held every two years and this was the 4th occurrence. This time Katie, James, Eleanor, Dave and Allyn made the trip to France. The expenses of some were subsidised with grants from Eurordis via Aniridia Europe. Our representatives have also attended the previous events in Duisburg, Venice and Oslo.

In Paris, there were 205 delegates, including 75 professionals from 20 European countries and at least one from each of Asia, Africa and the Americas.

Group photo of the new board of Aniridia Europe

The new board of Aniridia Europe, including our chairperson Katie

It began on Friday with the General Assembly of Aniridia Europe, a meeting to discuss the organisation’s business and elect a new board of directors. Katie was successfully re-appointed.

“I am delighted to have been re-elected to the board, so we can further strengthen our important relationship with our international partners” said Katie.

Saturday was packed with presentations on a range of medical aspects of aniridia. Over 20 professionals spoke about their work and answered probing questions from their colleagues.

Later the speakers and other officials were treated to a gala dinner.

On Sunday morning the talks continued before the leaders of each topic session provided a summary.

The audience watching a presentation

“We were very impressed by the variety and standard of the presentations. They were really informative and comprehensive. We also made lots of great new connections, with amazing people doing superb work in hospitals and laboratories all around the world.  It is so exciting to hear of new and increasingly successful ways to team with aniridia and how we can support them.”

More photos from the event are available on Facebook.

Aniridia Network has offered to host the next European Conference on Aniridia in 2020. More details on that coming soon.

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Al’s sight loss and depression journey

 

AlHi, I’m Al, I’m 28 and I’m from South Wales. I have been registered as severely sight impaired (blind) since birth due to aniridia and nystagmus, caused by a rare missing gene that resulted in a condition called WAGR syndrome.

At the age of 15 months, I was diagnosed with a Wilms tumor, which is a form of kidney cancer. I managed to beat that battle at the age of 3 years old, but my sight battle had barely begun.

As a child my vision was very limited. However I could walk the streets, read books/papers/magazines, see people’s faces. With the use of aids such as magnifiers I lived a fairly normal childhood, with the exception of having a support teacher on hand. I was confident, and I was full of life.

At the age of about 11, cataracts started to form in both of my eyes. My vision started to become more blurry, but still I could do the things I had always done. About a year later the cataracts were both removed within about 6 weeks of each other and for the next 2-3 years I actually felt like my sight was the best it had ever seemed, though far from perfect vision of course.

When I was 14 I started to develop glaucoma in both eyes. With the help of numerous eye drops and surgeries to control the eye pressures by inserting shunts in to the back of my eyes, I managed to go on for some time without further major loss of sight.

At 17 years old I left school and by the time I was 18 I started to notice that my sight was getting even worse due to the glaucoma. By the time I was 20 I was on the waiting list to undergo a limbal stem cell transplant due to epitherial breakdowns on the surfaces of my eyes.

Following this surgery, I personally saw no significant improvement to my vision, but was told it could take up to 18 months to heal fully. While that stem cell transplant did help with the epitherial tissue breakdown to my eyes, it didn’t improve the vision and by the time I was 22 my vision was at the worst it had ever been so far.

With my sight getting worse and worse I became less and less confident and begun to withdraw myself from the outside world far more.

It was at this point that I first became involved with both Cardiff Institute for the Blind and the RNIB. I became both a service user and a volunteer. While still feeling very scared and really lacking in confidence, I soon begun pushing through those feelings, because I knew I was around people who understood and who’d probably felt the same once.

So I began taking part in activities and courses with Cardiff Institute for the Blind, I also became a volunteer and ended up co-running Visual Awareness courses and becoming a committee member in a County Steering Group. I also started to organise some of the events for a youth group that I was a part of and I was even asked to attend numerous meetings for both Cardiff Institute for the Blind and the RNIB, to give input and feedback, both as a service user and as a volunteer. It was as though I had a purpose again, as though I had a new lease of life.

Then, after about 10 months or so, once again more eye operations came along. I had orbital decompression’s and a cornea transplant lined up. Due to the amount of hospital visits etc, I felt I had too much going on and withdrew from Cardiff Institute for the Blind and RNIB. In no time at all I was back to my depressed, non-confident, old self.

The cornea transplant went ahead when I was about 25 and the vision did improve a little, but nowhere near to where my vision acuity was as a child. The regular hospital appointments continued frequently.

Lately though, I’ve been thinking a lot about things and have decided that, at least for now, I’ve had enough of constant operations and hospital appointments. I’m finally realising that I have to start to accept that my vision is never really going to improve much more now. So it’s time to start accepting that this is my life from now on and it’s time to start living again.
Don’t miss understand me, I don’t mean to put you off seeking treatment yourself, just that sometimes it’s ok to feel like you’ve been put through enough.

The big problem with me is that I’ve always struggled with being seen and treated as ‘different’. My pride has always got in the way of me being comfortable using things like a cane in front of people, for instance. This is still something I’m very much struggling with. By letting my pride get to me, I feel like I’m isolating myself further from the world in the process and that’s making my depression even worse too.

So, if you’ve read my story then firstly, sorry that it’s so long. Secondly and most importantly, the point I want to make is; if you have ever felt anything similar, then you are certainly not alone. I really implore you to take deep breaths and say ‘screw you’ to your pride and take small steps towards freeing yourself from the prison of your own mind. Reach out to Cardiff Institute for the BlindRNIB or any other sight charity. Just see what they can do to help you become the best you that you can be, I promise you will be surprised and you will feel much better for it once you have taken that first step. Sight loss is a terrible thing, but it doesn’t mean it’s the end of who you are, it’s just really, really hard coming to terms with adjusting. That is one of the scariest parts of any sight loss, but reaching out for help really does make a big difference.

Have a great day. Thanks again for reading my story.

 

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Reviews of Conference 2018

Seated delegates. Woman holding microphone for child knelling on the floorPeople at the Aniridia Network Conference 2018 said:

“It gave an opportunity to learn about different aspects of aniridia. It made me feel like I really belonged there.”

Meeting lots of people and having a good variety of speakers made it very enjoyable and informative – helped me connect.”

The results of our survey about the conference tell us that it was very enjoyable and successful. Below is a summary, or you view the full and graphical survey results in pdf format. We have also written a response to some of the comments received and other blog posts about the day.

30 people gave feedback, of who 17 are parents to someone with aniridia. Only 7 had aniridia themselves though.

The general consensus was that the booking process was simple, efficient and easily accessible. Nearly 90% said they were happy with the ticket price of £21 per adult
and £8.50 per child.  This covered approximately 50% of the event costs.  and fundraised money was used to meet the remaining £2,750 expenses. Two people said the price was too cheap and 1 too expensive.

93% were (very) satisfied with the overall event, leaving just 2 respondents who said ‘neutral’. This is a fantastic outcome and shows how valued the conference is and how important it is for us to put on.

Dr Petch talking at a lectern

Dr Petch

All of the sessions were well liked. The ones rated as ‘very good’ by the most people were:

“Dr Moosajee gave a brilliant presentation of insight into the research that is being carried out, keeping it simple and free of jargon, allowing all to understand.

Fern’s personal account was truly inspiring, leaving all who attended with hope.”

Recordings of all the presentations are available on YouTube.

The highest rating was for the lunch and break times! These gave opportunities to talk to other delegates and visit the exhibition stalls.

Delegate talking and eating lunch around exhibition stalls while man with guide dog passes by

Over half of respondents felt that the event struck the right balance between presentations, opportunities to ask questions and meet other people. However over 27% (8 people) would have preferred more time chat.

This suggest suggests that people are mainly attending the conference to gather information.

“Thank you. I enjoyed networking:

  • hearing from young people with aniridia who have achieved so much despite challenges they have faced.
  • sharing our thoughts with other parents in the same boat
  • meeting those I have spoken to in the past over email or read about on the Aniridia UK website.

I also got information about drug research and understanding how hard everyone is working. It made me feel optimistic.”

Delegates talking while sitting and standing

Most people felt a day is the right length for the event and preferred an evening social activity, though many want this to be part day time event.

The most beneficial aspects of the event were:

“The up to date medical information, meeting others affected by aniridia and the
positive nature of the whole event. Made me feel better about the condition in
general”

Seated delegates at tables, watching a presenter and big screen

“It was enlightening, heart-warming and inspiring to hear from individuals and their families about their personal stories and how they are supporting one another.”

2 men a and women talking at a table

In conclusion delegates said:

“We were so impressed by the level of detail to support those attending. It was a great, easily accessible building, which was easy to commute to both by personal and public transport. The venue was well catered, open and spacious. The staff were very helpful and efficient. A great idea to have staff able to meet and guide attendees to the venue, to operate a childcare facility and also to those that cared for the guide dogs. The stalls were informative and the food was scrumptious!”

“I recommended it to anyone who has aniridia, or parents of children with aniridia,
because it is a great opportunity to meet others affected by the condition and gather
useful information.”

“The event was well organised, and it is definitely worth it for me to attend next year.”

We want to thank everyone for coming to Conference 2018 to make it such an excellent day. And huge gratitude to all the volunteers who made it possible, especially to Dave our Conference Coordinator.

Two woman sitting with backs to the camera. One is wearing a Aniridia Network t-shirt. Other conference delegates are in the background.

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Aniridia Map

People with aniridia are spread all over the world. But where is everybody based? How many people are there with aniridia in each country?

It’s impossible to have exact figures, but the Disease Maps website is a useful way to get an estimate of its global impact, if we all contribute to it.

The Aniridia Disease Map shows where people with the condition are based worldwide, for all those who have given their general location so far.

 

Map of the world with markers to show the locations of people with aniridia. Most are in the UK, Europe, and North & South America, but there are a few in places like Russia, Japan & Australia as well.

Currently there are just over 150 people on the map. The majority are in Europe, the USA and South America, but there are also people registered in Russia, Egypt, Libya, Japan and Australia.

We would really like this to grow, because the more of us that add ourselves to the map, the more comprehensive and accurate it will be. It could then be of great use to professionals such as researchers and doctors, as well as aniridia patients themselves.

So please do join the aniridia map and share it with your friends. It would also be helpful to fill out the aniridia survey while you’re there, which will help to build up information about the condition on the site.

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Responses to feedback about Conference 2018

Thank you for all the excellent feedback about this years conference. We will certainly try to put in place many of the suggestions that were made. We will publish the survey results shortly.

There were some points made, that we want to respond to; to dispel any misconceptions and explain why things are done the way they are.

Cost

“I am surprised that the event cost so much to put on. Assuming that the speakers did not charge for their services, I would have thought a cheaper venue of similar quality could be found – maybe outside of London?”

Plate of food including a tart, and two sandwichesThe speakers did not charge to appear. In fact those who were also delegates, paid to be there. We do extensive searches for suitable venues in every city we visit. Resource For London, with it’s discount for charities, is easily the cheapest compared to others of similar quality, facilities, size and accessible location. Catering is the largest single expense even though we choose budget menus. The total cost of just under £6,000 is similar to the conferences we have held elsewhere in the country including Bristol and Newcastle. We cover half of this cost from fundraising income to allow ticket prices of £21 instead of around £45 for adults.

We would love to hear of more low cost conference venues, close to major transport hubs, with capacity for 100 people in cabaret style, plus rooms for the creche and exhibition.

Structure of the day

“The afternoon break could have been shorter, particularly as some of the speakers had left by then.”

We of course hope that speakers will attend for the whole day, to talk with delegates. But their other commitments often only become apparent close to or on the day of the event.

Our feedback surveys of previous events are consistent that most delegates want long break times, because they value the opportunity to meet with others so much. Indeed this year the break times were the most highly rated element of the event! 62% said the agenda gave the right balance while 19% wanted more time to talk.

There have been suggestions to facilitate introductions and also timetable opportunities to chat as alternatives to talks that are less relevant to some delegates. We will look into these good ideas for future events.

“Split the conference into (parallel) sections according to the stage of life the talk is connected to.”

This is very difficult to get right. Many topics are applicable to a range of people. Parents of children with aniridia for example are in both categories of what initially appears to be a obvious segregation.

In the past we have tried running two sets of talks at the same time. Some people complained that they were unable to attend both sets. Repeating the talks is essentially the same as a single track yet increases the burden on speakers, potentially room hire costs and the complexity of having sight impaired delegates moving around the venue.

The timing of presentations is also often influenced by other factors such as length of the talks and slots, and the availability of the speakers. Lastly there is the desire for a sensible sequence so that the day flows well.

Annual General Meeting

“I thought the AGM slot could have been shorter”

“Have the AGM at the end of the conference so those who who do not wish to attend the meeting could leave earlier to travel back home”

We are required to hold the AGM, legally and to be accountable to you, our members. If less than 5% of members (about 30-40 people) attend it, the AGM is not valid. Therefore we have to hold it in the middle of the day, precisely to avoid people skipping it.

We do streamline it but should actually spend longer on the elections to be diligent.

As James described at the end of the AGM, one option is to change our governance model to be a trust, where members and AGMs are not required. This would solve one issue but could create others. We’d love to hear your thoughts on this.

Presentations

“Provide speakers helpful tips on audience, language and presentation of information so that each talk is beneficial to the majority.”

“Hold a rehearsal to give feedback and fix volume problems.”

We do indeed tell speakers to cater for parents, patients and professionals with different levels of understanding and so the need to use simple language. We also provide guidance on designing accessible slides, such as about contrast and font size. Plus we tell them to describe any images.

We do ask for slides in advance and in the past have sometimes organised run throughs, in a bid to catch problems. These are all subject to the speakers submitting their slides on time and their/our availability in advance and on the day.  We will continue trying to improve this, for example the great suggestions of referring presenters to a good example videos or even seeking advice from Fern!

Glen’s talk

“I think it was a shame that Glen Turner’s session was removed from the agenda.”

Yes it was a shame. Due to overrunning by previous speakers we were late by 30 minutes, the same time scheduled for Glen’s talk. Glen’s speech about his life with aniridia was only included at the last minute due to a cancellation by a doctor who was due to appear. So it was not advertised for most of the ticket sale period. Glen’s talk and other videos can also be viewed on YouTube and we had another talk from a patient scheduled: Fern. Lastly, having spoken to Glen  we were confident that he would be able to talk at a future event instead.

Dog bowls

there seemed to be no bowls/water for guide dogs. I know people could bring their own, but this can be difficult.

There were two water filled dog bowls but we admit that we didn’t highlight them. We will add it to our list of things to to tell delegates at future events. We’ll also try to arrange more volunteers to take dogs for walks to spend.

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Liz’s Aniridia Network Conference 2018

Different kinds of people sitting in rows of seats, one using a monocularThe conference venue is nice and bright and welcoming with really good coffee. So we were quite happy to wait for the fun to start.  Being early has meant that the offered guide from Holloway Road station wasn’t needed but actually it was quite easy to find with location being on the same road as the tube station.

Everyone seems to be really friendly though it’s hard to push past the nerves of being in a new place and new people and lots of noise to speak to many people to start with.

I force myself to talk to a lovely lady, her dad and her guide dog, who turns out to be speaking during the conference.  Having that initial really positive interaction made a big difference to how I felt the rest of the day would go.

We were showed were we could hang our coats, put our bags, get a drink and waited for the fun to begin.

I’m really glad my hubby was with me, who has sight as I think I might have struggled with the whole experience without his support emotionally and practically.

I found the speakers very interesting on the whole, but not having been to a conference about something so personal to me before, I found the experience quite intense.

I would definitely recommend you go to a future conference, if you want to find out more about aniridia and get the benefit of other’s experiences.  Even though I needed to pluck up a lot of courage to find and talk to people it was definitely worth it, 100%.

I left knowing more, feeling more like there were different possibilities in the future than I had thought of and like I belonged to an extra family full of support and shared experiences.

I will be waiting keenly for the next conference dates to be announced.

Aniridia Network wristband on a Conference 2018 agenda

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500km Bike Ride Fundraiser

Map showing Matt's route across the country from Aberystwyth to Great Yarmouth.Cyclist Matt Hill took on his biggest challenge yet in aid of the Aniridia Network – riding 500km in a single day! That’s 100km further than the ride he completed for us last year.

On Saturday 16th June, Matt cycled across the width of the country. His adventure started in the early hours, crossing the Welsh mountains in the dark, before heading into Shropshire, the Midlands, Northampton and Cambridge, and finally coming to rest in Great Yarmouth on the East Coast. There he met Martin, one of of our trustee’s to receive our thanks in person.

Matt Hill smiling, with arms outstretched, wearing a white Aniridia Network t-shirt, black trousers and a black cap.Matt was inspired to ride for us again after attending this year’s conference in London, joined by friends who have a son with aniridia, where he saw how money donated last year went towards vital projects and events. This included the £4,400 he raised in that period.

Matt was therefore keen to raise even more money this time around, with a target of £5,000. He ended up raising over £7,100!

Please go to Matt’s JustGiving Page to find out more and donate if you can. If you are a UK taxpayer, please remember to select Gift Aid, which will increase the donation at no extra cost to you.

We thanks Matt immensely for taking on another challenge on our behalf.

 

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