Presentations & Exhibition at Meeting 2016

Posted on May 14, 2016 by Aniridia Network

After the morning riding tandems and playing VI cricket, the Aniridia Network UK Meeting 2016 moved to nearby Holy Trinity church.

Sitting down to for lunch gave us all more opportunities to chat, meet up with and make new friends.

Man serving sandwiches to a man., woman and child

“Meeting and talking to others with aniridia made me feel really positive about my son’s future.” Jenna

Delegates sitting looking at a baby being stood on the table by a man standing behind it.

“As a mother of a young child with aniridia, I was happy to meet other families. I was worried about the future but seeing how people cope at first hand made me feel confident about how she will get on with her life.” Anastasia

Delegate sitting talking around a circular table

“It was good to meet some new people. I sat with a few first-timers to the conference and it was interesting to hear their stories.” Sarah

Trustee James welcomed everyone, gave some orientation tips and then introduced the expert presenters.

Dr Jane Leitch spoke about the less often discussed effects of abnormalities in the PAX6 gene that usually causes aniridia.

 

“The presentation by the doctor was great as it was easy to understand and I learnt a couple of new things that I hadn’t previously been aware of.” Parent/carer

Debbie, the ANUK Daily Living Advsier gave an interesting insightd into the work of a mobility professional as well as a person with aniridia.

“Interesting talk on managing daily living activities with severe sight loss.” Parent/carer

“Just learned a lot what daily life with aniridia means, so helpfull!!” Lisa

We were then treated to the next instalment of Harry Westwood’s story, since he talked at the ANUK Conference 2014, he has started university.

 

Harry highlighted the everyday challenges he faced in living independently from catering for himself to navigating a strange campus.

“[I enjoyed] the opportunity to get real life information which you do not always get from doctors.” Carolyn

Next was the formal part of the conference, the Aniridia Network Annual General Meeting 2016 including the Annual Report 2015/16. The current trustees were re-elected. 

Man wearing ANUK t-shirt at lecturn talking to audience in a hall

After the AGM, we were encouraged to write a pledge on a positit of something, large or small, that we could do to help keep ANUK running in the future. Everything the charity does is done by volunteers, from the fundraising so that events like the conference can be held to the everyday administration of running a charity.

During the break delegates could chat and browse the exhibition in the atrium. A share of the profits from the commercial stalls was donated to ANUK.

Lots of delegates talking to each other in the atrium

For the first time at our events, our Medical Adviser provided an opportunity for informal consultations for patients and family members.

Woman and man holding a baby wearing sunglasses, sit speaking to a doctor

“Glad my partner was able to speak to a surgeon about corneal surgery which was worth its weight in gold; as he has little opportunity to talk frankly in a non pressurised environment with an expert in aniridia.” Clare

The second half offered a choice of talks. In one room was Daniel from Nystagmus Network and Jenny representing Blind Children UK. Meanwhile in the main hall was Emily who has aniridia, talking about her: life, campaigning and politics.

Woman giving speech to audience

“I particularly liked hearing Emily’s story and how, whatever your background or variation of aniridia, it is always possible to pursue the career that you are passionate about.” Sarah

This was followed by Maria from Living Paintings demonstrating their service

“It was an interesting exercise in using your tactile skills, which as a non-Braille reader, mine could probably be better.” Sarah

James bought the meeting to a close. We showed our appreciation for the all the coaches, riders, chefs, speakers, exhibitors and other volunteers for all their hard work to stage the event that made it such a success.

Mum and daughter with a cube toy alongside a man with a bottle of wine

There had been a fundraising quiz. The winners of collected their prizes.
Several delegates adjourned to the local pub to continue swapping experiences.

 

The event was best summed up by the following quotes:

We’ve had a great day today, listening to some excellent and informative speakers. Thank you.” Clare

“It was my first time attending, I found it very informative and excellent having the opportunity to talk to others with a similar eye condition. There were many volunteers present which helped to make the day run very smoothly. Everybody was so friendly and it was a real pleasure to attend.” Eleanor

“I gained more understanding and knowledge on aniridia and things that relate to me. It was good meeting others, I enjoyed the experience.” John

“Totally recommend this event for those involved with aniridia. It was an interesting day and left the best impressions, especially when everything is planned and delivered by volunteers. Thank you and keep doing it!” Anastasia

“I enjoyed the talks and chatting to others and it was great to feel included and in a group rather than feeling alone. My son was buzzing on the way home as he had never met anyone with aniridia and he now wants to help raise awareness and funds. He really enjoyed speaking to new parents of a 6 month old boy as he felt he could reassure them that his life had been great and aniridia was a part of him but it hadn’t defined him.
I purposefully spoke to them as I remember being that scared mum at a VI event 19 years ago and felt reassured when I spoke to other mums ahead of me on the journey.” Philippa

And this one says it all:

“I felt on the day of the conference everyone went above and beyond to ensure those who attended gained something out of the day. Personally I gained a huge amount about resources and useful information about aniridia. As a charitable organisation, it is a project very dear to my heart. I want to become a volunteer eventually. “Join Aniridia Network Shout it with pride!” Just need to spread the word using social media, TV, radio, charitable organisations, teaching hospitals etc.” Carole

Back in the church hall there was a big 60th birthday party for Mary, the event co-organiser. There were a variety of fundraising activities in aid of ANUK and Guide Dogs Association. The grand total raised for ANUK was £380!

A massive thank you goes to everyone who attended and contributed to the wonderful day for everyone.

Find out what happens after our big events and view the slideshow of more photos from the day:

Parents thanking and shaking hands with a person with aniridia

Words and pictures by:
Sarah, Lyn, James, Katja, Moragn, Clara

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2016 Annual General Meeting

Posted on May 14, 2016 by Aniridia Network

The Annual General Meeting of Aniridia Network UK was held at: Holy Trinity Church , Maldon Road, Wallington, SM6 8BL at 2:30pm 14 May  2016

Read the minutes of the ANUK 2016 AGM (pdf)

Agenda

  1. ANUK AGM minutes 2015Man wearing ANUK t-shirt at lecturn talking to audience in a hall
    to be agreed
  2. Matters arising.
  3. Reports and Accounts
    To receive and consider the accounts for the year ended 2016 and the reports of the charity trustees
  4. Any resolutions received.
  5. Appointment of charity trustees
    To (re-)appoint the following as trustees until the 2017 Annual General Meeting (tbc):

    1. Katie Atkinson,
    2. James Buller,
    3. Ben Rendle,
    4. Martin Flemming
  6. Any other business

By order of the Trustee Board
Katie Atkinson, Chair

The 2016 AGM was a session at Meeting 2016. ANUK Members could come to the AGM for free but to attend other sessions the event ticket fee had to be paid.

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Tandems and Cricket – Meeting 2016

Posted on May 14, 2016 by Aniridia Network

The main Aniridia Network UK event of 2016 took place in Wallington, Surrey. In a change from our usual format, we spent the morning in a park. dry and clear, ideal for trying out tandem riding and visually impaired cricket. Lots of families and individuals of all ages and capabilities came to Beddington Park to take part. It was a huge success as the quote and photos below show.

“I thought the activities broke the ice and were light-hearted, fun and inclusive for all ages and abilities, which was great.”
Philippa

“The sports were brilliant and beneficial for kids.”
Parent

“I liked the mix of activities in the morning it gave everyone a chance to meet informally. Great to have so many children participating.”
Lyn

The tandems were provided by the charity Wheels For Well-being. The pilots were people’s family members or volunteers.

Two girls on a tandem

The VI cricket session was run by Change Foundation coaches led by Lois, who has aniridia and captains the England Women’s VI Cricket Team.

Man swinging a cricket bat at ball on tee

For lunch and the presentations and exhibition element of Meeting 2016 we move to nearby Holy Trinity church.

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Skin in the game – participation in aniridia research

Posted on May 11, 2016 by Aniridia Network

Sarah tells how her skin sample is helping research into aniridia, and yours can too.

Having a rare eye condition can seem like a disadvantage a lot of the time, but there are times when you get an exciting opportunity to do something that very few others can.

Over the years I have participated in several research projects:

  • retina scans
  • giving blood samples (I think I’m up to nearly half a dozen now)
  • having my brain scanned in a MRI scanner twice.

All this on top of being the usual object of curiosity of medical students during hospital appointments. It’s always fun being an expert in something that dumbfounds others!

2 women and a man in a lab wearing white lab coatsI was recently contacted by Professor Jane Sowden, who is conducting research into stem cells. She and PhD student Lisa Hentschel and Dr Jorn Lakowski are part of the team undertaking this research at the UCL Institute of Child Health supported by Great Ormond Street Hospital Children’s Charity (GOSHCC).

They are growing a specific type of stem cell in the lab using samples from several volunteers with aniridia, caused by the PAX6 gene.

Stem cells have to be taken from the person’s skin in a biopsy and then ‘re-programmed’ to become “induced pluripotent stem cells”; (iPSC). These are then grown in the lab with special growth factors, so that they form eye cells. The researchers will grow retina cells and aim to better understand which cells are altered when the PAX6 gene is not working properly.

My reaction to these requests has always been that I am relatively lucky in that although my vision is not great, I can lead a relatively independent life. I am at least a third generation aniridic. My grandfather’s understanding of his condition was limited – we think he was the sporadic case. Even with today’s medical knowledge, it may be very disconcerting for a family to have a child with aniridia, where there is no previous history. So any small thing I can do to help build knowledge and understanding of the condition is a small sacrifice for me, with potentially a great gain for others. It was with this in mind that I agreed to participate in the research and donate a skin sample.

Although medical procedures are not my favourite thing to do at the weekend, I arranged an appointment for the biopsy at Great Ormond Street Hospital.

The medical and research staff there were very helpful and put me at my ease. It even  emerged that we all had a connection with my home town. Everyone made sure I was comfortable and explained what was going to happen.They also took down my medical background.

They were quite excited, as although we were in a basement, it  was part of the modern clinical research facility and a step up from their usual accommodation.

After a briefing, I had a shot of local anaesthetic, which is never a pleasure, but was done skilfully and quickly. The sample taking was quite quick. I was in and out in under an hour.

As with any research study the outcomes are not going to be known for some time, but one advantage of being one of the participants is that you do get to hear about the results quite soon after they are available. That this will not be for a few years yet.

Using the cells donated by volunteers by me and others with aniridia, the researchers will be able to analyse human retinal cells with altered PAX6 genes for the first time which will help us to better understand the condition.

Getting involved in a research project is a great way to find out what goes on behind the scenes of the usual check-up appointments and after you have played your part you leave with a pleasant fuzzy feeling of achievement. It’s great to be involved in taking a step forward in understanding what aniridia is and how it’s effects

It is exciting that the researcher will be at the ANUK Meeting 2016 to discuss their work with anyone who wants to know more.

If you want take part in the research too, fill in this form and we’ll pass on your details to the team.

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Thank you for your response. ✨

 

 

 

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Serena and Violet with aniridia and thier mums make friends

Posted on Mar 31, 2016 by Aniridia Network

I met Dawn and Serena at an event held at Eureka Museum in Halifax aimed at visually impaired children. I recognised her from an Aniridia Network UK conference we had both attended in previous years, So I approached her to offer a friendly hello

Since then we kept in touch on Facebook.

Dawn lives near Liverpool but said that she loved Eureka and would be visiting again with Serena. Dawn got in touch and we agreed a date to meet there so that Violet and Serena could play together.

For me the meeting came at a great time as Violet has recently been asking lots of questions about her eye condition and has been learning why her eyes are different, why she needs multiple pairs of glasses, and gaining the confidence to explain this to others all by herself.

When I explained to Violet that we would be meeting Serena who has the same eye condition Violet said “wow we could be twins” … She was really excited to meet somebody who had the same eyes as her.

Serena and Violet eating lunch together at a table

I think it did Violet the world of good to know that there are other people with the same condition and that it wasn’t just her ….. It might sound strange but I think it made things seem more normal for her if that makes sense.

On the actual day we met Violet and Serena luckily just took to each other straight away, they held each other’s hands without been prompted and guided each other around the busy environment.

Serena really took to me too and often cuddled me which her mum said was unusual for her.

Serena Natasha and Violet

From my perspective, it was really good to spend time with another child with Aniridia and to be able to chat with Dawn about all things related.

For example, Violet has managed to get a full-time EHC plan in place (formerly called a statement) whereas Dawn has not yet been able to get any supported hours in place for Serena even though she is 7 months older than Violet. So it was good to talk about these types of things and offer support from our own experiences.

By Natasha

Have you had a similar experience? Please tell your story,

To make your own personal connections like Natasha and Dawn, Serena and Violet come to our events to meet others or use our befriending scheme. to be put in touch the kind of people you want to speak to.

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Report on long-term results of artificial iris implants

Posted on Mar 12, 2016 by Aniridia Network

A review of 34 patients with congential, traumatic iatrogenic aniridia who had surgery to implant artificial irises has found:

  • No repositioning of prostheses was necessary.
  • In cases of keratopathy (17.6 %) visual function increased from baseline mean.
  • The remaining iris tissue darkened during the follow-up in 23.5 % (83.3 % with and 10.7 % without mesh),
  • 8.8 % developed glaucoma (50 % with and 0 % without mesh)
  • 14.7 % needed consecutive surgery (50 % with and 7.1 % without mesh)

Conclusions

Good clinical outcome in terms of long-term stability, cosmetic appearance, visual function, and represents a good functional iris diaphragm for compartmentalisation.

Complications such as glaucoma, darkening of iris tissue, and need for consecutive anterior segment surgery are clearly associated with implants with integrated fiber mesh, but not to those without.

Hence, the use of full iris prostheses without embedded fiber mesh, even in cases with remnant iris, and the use of slightly smaller implants than officially recommended may be beneficial.

Read  the full study

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Hannah’s rare story

Posted on Feb 29, 2016 by Aniridia Network

Today is the rarest of days , so what better day to raise awareness of rare conditions and the people that live with them every day.

I am 1:47,000 which makes this 1:1401 day (365×4+1) sound common.

What makes me so special?

Aniridia, a from birth genetic eye condition, I don’t have irises (the coloured part of the eye) and I was born with low vision that cannot be corrected with glasses. Although I wear them because I’m lucky enough to be long-sighted too.

Being rare has its pros, I’m never lost for a conversation starter.

But it can also be lonely, although genetic I did not inherit Aniridia from my parents (which makes me even more rare) so I had no relatives with the condition, I went to a mainstream school and statements of educational needs were relatively new . Before most visually impaired kids went to special schools, so I was the only one I knew with black eyes. Sometimes people would say that they were brown but I did not like this as it wasn’t true. I was the only visually impaired child almost, if not all, my teachers had taught

I was the half-blind girl, the one with the worst vision. No one saw the world I did
I was the only one to wear sunglasses all year round because I am very sensitive to light, particularly sunlight.

I am always a medical curiosity doesn’t matter what type of doctor it is they will find a reason to have a look in my eyes. I have even been asked when taking my girls to appointments!

It’s lonely because there’s no one else who knows what it’s like to be you, nothing to compare yourself against.

When I was younger I imagined other people with aniridia, they all looked like me because I had no other comparison.

One day in 1997 when I was 17 I was bored and had a new computer with that new internet on it. I searched ‘aniridia’ not very hopeful to find much. I think it was about 900 results. Over a number of weeks, I went through each one.(I had way too much time on my hands in those days). I bought myself a medical dictionary, read biology text books until I understood all the medical reports. I found out a world of info on Aniridia I had not known before.

I also contacted everyone who had ever written in a forum asking about aniridia. I developed a network of friends affected by Aniridia both people with aniridia and parents with children with aniridia. I eventually set up a Yahoo group to help us all communicate with one another. I also set up a website with all the information I had found.

The group was international but through it I found Beth and James and we met up for the first time I saw myself through other people’s eyes. I learnt my vision is on the good side of average for people with aniridia I didn’t have the best or worst vision, I made life long friends (hopefully!?) and my self-confidence grew because I understood how I fitted in.

In 2000 Beth and I set up Aniridia Network UK, just teenagers at the time.

When I had my first daughter I had to stand down from the ANUK committee but I knew the others would keep it going and I am glad that it continues to grow and support people with aniridia,

By Hannah

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Thanks to Dassault for technical donation

Posted on Feb 16, 2016 by Aniridia Network
AV donation1 2015 300

Katie receiving the donation from Tony

A big thank you to Dassault Systems for donating audio-visual equipment to Aniridia Network UK.

Tony and colleagues, working in Warrington took part in a challenge to buy an item for up to £200 for a charity. He remembered our Christmas raffle last year asked us for ideas.

We were delighted when Tony presented our Chair Katie with a snazzy Zoom H4nSP audio recorder plus a case, 16GB SD Card and mini-tripod. This will be really useful for capturing talks at our events to publish online.

Dassault Systèmes, the 3DEXPERIENCE Company, provides business and people with virtual universes to imagine sustainable innovations. Its world-leading solutions transform the way products are designed, produced, and supported. Dassault Systèmes’ collaborative solutions foster social innovation, expanding possibilities for the virtual world to improve the real world. The group brings value to over 190,000 customers of all sizes, in all industries, in more than 140 countries. For more information.

Could you or your company donate us new or old equipment? Get in touch to see if we’d find what you have useful.

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London meet up 2015

Posted on Nov 3, 2015 by Aniridia Network

People with aniridia and parents sitting around a table in a coffee shopWe’re had an informal get together in Kensington on today. Ten people came along to for coffee and chat about aniridia. This included people of all ages who have it and parents of those who do.

It was held as a fringe event right after the excellent, free Sight Village London event for people with visual impairments.

It was also an early celebration of the annual Nystagmus Network ‘Wobbly Wednesday’ – 85% of people with aniridia have nystagmus too.

The hosts were two of ANUK’s trustees who have aniridia themselves. Katie was there initially. Then James took over in the evening for those, like him, coming after work.

If you want to organise a meet-up near you email meetup@aniridia.org.uk.

 

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Review of Newcastle Conference 2015

Posted on Sep 26, 2015 by Aniridia Network

By Sarah, part of the Conference committee 

Preparing and planning

Three woman and a guide dog outside the entrance to The County Hotel

Venue scouting in Newcastle

Organising for a conference is a bit like making a large purchase. You do your research, ask people who can help and enlist the help of a friend or two, Once you have your new pride and joy you treat it gently before it becomes part of the furniture and you can look back on a satisfying purchase that suits all the people who will use it.

In the early stages, we were uncertain about the number of delegates who would come if we held the conference in the north east of England. When registration closed we were delighted to have exceeded our minimum financial target number of 50 adult delegates.

Conference Eve

When the organising team and the trustees arrived in Newcastle the day before the conference we had a preparation meeting to brief everyone on the logistics of the day.

We also had a rehearsal of our presentations, to check everyone knew when and where they needed to be. The chance to practice with a group certainly ironed out a few wrinkles for me.

Afterwards, we went to the County Hotel venue. The main room was almost set up ready for the following day, which gave us a chance to check a few practical things. We had a few queries, all of which the County Hotel staff were able to resolve for us. There was also some preliminary technical work to be done for the audio-visual side of the day.

We had left London early that morning so I was quite tired. Given the necessary early start the next day to make sure everything was ready in time for the arrival of delegates plus a full day of activity, I decided to have a quiet evening. However this involved practising my presentation one more time and double checking that I was familiar with my slides. I didn’t stay up late, to try and be fresh for the following day, but I know that there was certainly at least one other member of the conference team who burnt the midnight oil that night to make sure that the slides for all presenters were ready for the big day.

Conference day

26 September dawned. After a sustaining breakfast, we headed to the conference suite to check everything was in place. After being involved with organising and attending three conferences, I finally bought an ANUK t-shirt. (I made time to do so this year, as once things get started it’s pretty much non-stop).

Sarah in front of projection welcoming everyone to Conference

Once delegates started to arrive we all took our places to carry out our various roles.

We had one moment of concern, when we thought we were going to have to shuffle our agenda, One speaker only arrived as their slot loomed..

There were several sessions during the day of some very interesting scientific presentations. Even as an aniridic you think you’ve learned a lot about your condition over the years, but even now I pick up on new information.

Man pointing at projection showing a large eye

Martin Collinson presenting

One of the sessions in the morning was our AGM. ANUK agreed to move forward with the proposal to put the charity onto a more formal regulated footing.

Delegates sat around a table

We had a split session in the afternoon with one stream looking at education and the other about sport and leisure. Both of these sessions produced some lively debate and enabled us all to share and gain from the experiences of others.

A panel of speaker with an audience asking questions

After the conference, we invited everyone to the hotel bar to renew old friendships and build on the acquaintances that had been made during the day.

Looking back

The good feeling among those who organised the event was reflected in the feedback from our delegates. 67% of those who responded to our survey were very satisfied with our conference.

All sessions of the conference were well received, though ’Aniridia Check Your Knowledge’ rated the highest. Most delegates who responded felt that the length of the conference and the social activity were about right.

Man and woman speaking into a microphone, seated in front of a laptop and a projector

James and Jenny presenting ‘Aniridia: Check Your Knowledge’

What was the most beneficial aspect?

In our survey we asked what delegates had found to be most beneficial about the conference, here are a selection of some of the responses that we had:

“The opportunity to share experiences.”

 

“Finding out more about aniridia and meeting lots of people.”

 

“Everything, and I would like to be a member please? Thanks to all for a wonderful day!”

 

“Meeting other people with aniridia, especially the trustees who have achieved so much with their lives. It gives hope and inspiration to people with young children with aniridia that they will be able to achieve and succeed in life, just as much as their sighted peers.”

We also received this feedback on the conference in general.

“You’ll find a very welcoming atmosphere and people who are happy to help and share with others.”

Thanks and see you soon

We were very pleased with how this year’s conference went, both in terms of the service we had from the County Hotel, who did everything they could to make it a success, to the number of delegates that came.

The Trustees would like to thank everyone (speakers, delegates and volunteers) for making the event a success and we look forward to seeing you at future events.

View more photos of Conference 2015 on Flickr

Delegates looking at exhibition stall and talking with each other

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