Going to a work place party

Last Friday I attended an event organised and funded by the trustees of the charity I work for. The event was a 2 course dinner followed by a prize raffle and disco. The dress code was ‘dress to impress’.

Before the event I was really looking forward to it, as it would be my first staff social. I was looking forward to meeting new people and getting to know others better. I thought it would be interesting to see people away from the work environment, to see if they acted differently when socialising than at work.

However as the event got closer and closer, I got more and more anxious. I started to worry that I would feel left out, and that nobody would want to talk to me. I worried about how difficult it would be to talk to people and understand what they were saying because of my auditory processing difficulties (APD) which is likely to be connected to the fact I have aniridia. I was also anxious about how I would get home, I was not keen on the idea of getting a taxi on my own after midnight!

The night before I got very worked up, all the anxieties came to the surface. Another of my main concerns was what I was going to wear – I’d heard rumours that people were going to wear ball gowns, and was not sure if this was serious or not. Believe it or not, I only own 3 dresses, oh and 1 skirt! So my choice of clothes was fairly limited. I settled on wearing a black dress with a gold cardigan and gold shoes, and a gold bag. My jewellery was bronze, brown and orangey in colour, which all went nicely with my reddish/brown hair. Once I knew what I was going to wear, I felt a little bit more settled. My dad helped me find some numbers of taxi firms who had women drivers, which was kind of him and again that made me a little less anxious.

My sister kindly dropped me off at the venue and walked in with me, so I didn’t have to worry about where to go.

Once inside I recognised a woman who works in reception, and started chatting to her. She guided me and helped me to find a drink of champagne as we walked around the room together saying hello to people. I thought it was very kind of her to let me hang around with her. It certainly made me feel at ease, knowing that I was with someone I knew and wasn’t just standing around feeling stupid and awkward.

Next I met my friend Dawn who helped me put my ticket in a box ready for the draw later.

It was very very crowded and noisy, there were so many people. I think I heard someone say that there were 200 of us! It was strange because I didn’t realise just how many people worked at the school and college, it doesn’t occur to you when you work in a very small department.I was on table 11 with my colleague Stuart and his finance and the rest of the people on our table were from the mobility department. While we ate our food, I chatted to some of the women from the mobility team. It was okay to hear the person on my left, but I couldn’t hear the person to her left very clearly when they spoke. I think it was at this point that I noticed my APD difficulties most, I often had to keep asking people to repeat what they had said. It’s hard to explain, I had heard them, heard what they said, but couldn’t put it in order so had to ask them to repeat themselves.

I amused one of the mobility women by telling her that with alcohol my nystagmus slows down, I don’t usually notice it but I do tend to realise when it slows down. The lady was so impressed she told everyone on the table what I’d said!

One amusing thing that happened during the meal, was when a woman came over to our table and draped herself on my shoulders and told me we’d met a few times at work and asked if I was having a good evening. I think she was a little bit intoxicated! As my close friends know I really hate being touched by people, so really didn’t enjoy the experience and just wanted to get rid of her because she made me feel very unsettled! After she’d finally left, the woman sitting next to me asked who she was, I said “I have absolutely no idea!” No one else seemed to know her either and she didn’t hug anyone else on our table just me! Very odd!

After the meal we had tea and coffee and mints and then there was the raffle. I didn’t win anything though. I’m not sure what the prizes were but I think it was either wine or champagne of some sort.

After the raffle was done, it was time for the disco. I stayed on my table and chatted to Stuart, and then a support worker I know came over to say ‘hi’ and introduced me to her husband. She ended up staying with me for the rest of the evening and it was really lovely to get to know her better. Another support worker came over and tried to get me to drink more! I don’t mind drinking a bit, but I don’t like feeling totally out of control so try not to drink too much. I didn’t dance much, but I did dance to a couple of songs, a Greece song and ‘Summer of 69’ by Brian Adams, and had great fun.

Just before midnight one of the mobility team came over to tell me she’d organised me a lift home. I was really pleased and very thankful to her.

Overall it was a really fun event and I thoroughly enjoyed myself all evening. I found I wasn’t wishing the time away like I’d worried I would be.

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Aniridia Network UK online in 2011

In 2011

  • This site was viewed about 5,700 times. If it were a train, it would take about 5 trips to carry that many people.
  • There were 35 new articles, growing the total to 51.
  • Our Facebook page:
    • grew to 285 followers
    • followers are mainly from the UK and USA.
    • 72% of followers are female
    • 64% of followers are aged between 25 and 44.
  • Our Twitter account grew to 133 followers – mostly similar organisations. VICTA and Nystagmus Network in particular often retweet us.
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London meet up: A personal review

James and Keith sitting at a table opposite each other

James (left) and Keith (right)

By Keith

The London meet up was surreal. Of the 14 people who turned up, so many of them were so like me.

In one evening, I learnt so much about a condition I’ve had since birth. For the first time in my life I feel I have peers who understand my condition, in many cases a hell of a lot better than I do. For the first time I felt supported. It was a really strange experience.

But it doesn’t come without a bit of hard graft. I’ve agreed to help with the Aniridia Network UK membership database!

I always knew that aniridia was, a genetic condition related to a defect in some genes. But I had, wrongly, assumed it only affects the eyes, in particular the iris – but it doesn’t.

There is an even rarer condition called WAGR/11p Deletion Syndrome (which if a child has aniridia it should be tested for) which has additional complications including kidney tumours. It is so rare there hasn’t been that much research into it.

Another, un-proven, but suspected link, is that those with aniridia may have issues with hearing (audio processing difficulties). It mainly, affects conversations in busy environments, where the individual hears what someone says but can’t interpret it properly. Wow, I suffer that all the time! I had put it down to people mumbling, but now it might be to do with my aniridia mutation/deletion.

I found out that the scarring that I have on the cornea is pretty common for those with aniridia. I also spoke about seeing flashing blue bolts of lights passing through my eye, Some people there said they had experienced something similar.

Compared to some of the others who have had lots of eye operations, I need to count myself extremely grateful that I have not.

Also, and this is purely my own observation, but I think that my gene defect seems to create individuals like me. I was seriously out ‘geeked’ by some of them. Heather, who is an American living in Woolwich, works on a technical support helpdesk for a software company. James, who lives up in Walthamstow, is a website developer. Andrew, from Birmingham talked about building computers all night. The others were less technology focused, but all seem to have quite logistical and organised personalities. It was so strange.

So, a really interesting night.

My friend Adam appeared to enjoy it although he’s not a restaurant man. He managed, god only knows how, to just drink 3 bottles of beer in 4 hours – but nearly passed out at the £14.50 cost! If that wasn’t bad enough, he was stunned when they charged me £33.50 for 4 beers, and fish and chips. Pretty tasty though – and a restaurant with good lighting.

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London meet-up review: A big success

7 people sitting a table in a bar

From left to right and top to bottom: Mark, Margaret, Keith, Andrew, Heather, Toni-Kaye and Adam

A fantastic 14 people with aniridia, plus relatives came to the meet-up in London in early November. There was great chat about all aspects of life and new friendships created.

The evening started at 6pm at Belans bar on High Street Kensington. It was organised by Aniridia NetworkUK trustee James together with volunteer Heather.

There was a real mix of people: from a teenager to a pensioner and a range of sight loss too. Canes and monoculars were compared while the two guide dogs got acquainted. Many were meeting others with aniridia for the very first time. New facts were learnt and misconceptions cleared up.

Tracy who has aniridia (as well as her son) said “I really enjoyed the evening and it was great to meet so many new and lovely people! Thank you for organising it”

Keith who only joined Aniridia Network UK last month said “I had an excellent time and am looking forward to the next one.” (Read Keith’s own account of the evening) He has now volunteered to use his expertise to improve the charity’s database of contacts.

The bar management were great. The at-table service made getting food and drinks easy. At one point they asked if it was ok to turn the lights down, but then were happy to put them back up when we said it was too dark for us. The food was as delicious as when James and Heather did their reconnaissance too.

Setting the event near and straight after the Sight Village exhibition worked well as an extra draw. Four people made long journeys to come to both.

James reflected “It’s the first time the charity has arranged such an event. So we were thrilled with the level of interest. Several other people really wanted to come but sadly couldn’t this time.”

Joint host Heather said “I thought it was a very successful evening. It was great that so many people were able to join us.” Heather is now gearing up to coordinate Aniridia NetworkUK’s annual meeting in Manchester next year.

“Between now and then, we are arranging another meet-up in Coventry” said James. “In the meantime of course we encourage everyone to interact with us and each other via Facebook, Twitter and email – or in person if they wish.”

Do you fancy arranging a meet up in your area? If you find the venue Aniridia Network UK will advertise it to all our contacts. We’ll do our best to send a representative along to help host it too. We also need people in the Manchester area to help organise the annual meeting. Please get in touch with any ideas you have.

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Manchester for annual meeting 2012

Manchester, Saturday 19 May 2012 – put it on your calendar right now. That’s where and when the next big Aniridia Network UK meeting will be. It is your chance to hear from and ask questions in person to:

  • people who have aniridia
  • parents of children with aniridia
  • professionals with expertise relating to aniridia
  • the Aniridia Network UK committee

The 2011 meeting was a big success. Newcomer Jane said “The highlight of the day for me was definitely being able to meet other parents of children with aniridia, sharing experiences with those at the same stage and receiving wisdom from those who have already ‘been there’. Also, being able to ask honest and open questions of people who have aniridia themselves and to know that there are so many people out there who would be willing to chat to my daughter and support in her journey.”

The venue this time will be the Manchester Conference Centre: “in the heart of Manchester city centre, just 300 metres from Manchester Piccadilly Station” and close to tram bus and coach stations. It is part of a hotel and others are nearby. We’ll announce more details in the coming months.

This year we are extremely grateful to Heather for volunteering to be the Meeting Coordinator. Having a focused individual like her should make it easier to organise. Plus it allows the trustees time to concentrate on other important issues. But Heather really needs your help. Could you:

  • lend a hand with some administration?
  • set up a fundraising event for after the meeting?
  • be or suggest a speaker?

If you have any suggestions please email her.

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Charity strategy update

Plans for the next two years were the result of the trustee’s latest strategy day. We decided the charity’s priorities for 2011-12 were:

  • increasing the number of volunteers
  • boosting funds raised from donors
  • strengthening how we administer the organisation.

Katie, James, Jenny and Liz met in September. As last year, Liz kindly hosted at her home in Yorkshire.

Table with flip chart paper on it, covered in postit notes with tasks written on them. Vertical is labelled importance and horizontal labelled urgency

The result of the prioritisation exercise. See the link PDF for a clean electronic version.

We had drawn a graph on flip chart paper, with axes for importance and urgency. On this we placed post-its to show when we thought tasks need to be done. You can see the result of this exercise [PDF]. We would like to hear your feedback on these plans.

The immediate priorities were of course:

  • publishing the autumn newsletter, and organising the next annual meeting
  • but also establishing methods for (online) donations and transaction management
  • plus more audio visual web content.
Three women sitting around a table with laptops and meeting papers

Jenny, Katie and Liz discussing issues

We decided to take a new approach to membership (more on that soon). This means it is vital we make a big push to get more people involved with running the organisation and raising money to support its activities.

If we achieve those things we will be able to be more proactive, for example:

  • providing resources to patients and parents
  • reaching out to doctors and other relevant professionals
  • campaigning on important issues.

So how can you help? We need you to:

The roles we need to fill are:

  • Chair
  • Treasurer
  • Secretary
  • Fundraising
  • Newsletter / blog editor
  • Facebook/Twitter community manager
  • Webmaster
  • Support / buddy scheme co-ordinator / contact for parents with a newly diagnosed baby.

Please contact us if you can help in any way at all.

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Give as you Live – a simple way to raise money for Aniridia Network UK

  • Would you like to raise money for Aniridia Network UK?
  • Do you shop online?
  • Then why not join Give as you Live?

It’s an online shopping portal run by Everyclick.com featuring many well known high street stores such as:

  • Marks & Spencer
  • John Lewis
  • Dorothy Perkins
  • Monsoon
  • Toys ‘R’ Us
  • Early Learning Centre
  • Comet
  • Currys
  • Sainsbury’s
  • Tesco
  • Asda

Every time someone shops with Give as you Live the retailer makes a donation to the customer’s favourite charity. With Christmas fast approaching this is a great time of year to raise money through online shopping, whether it’s buying gifts, selecting a party outfit or simply ordering your groceries for Christmas dinner!

It’s easy to use,

  1. simply visit www.giveasyoulive.com and if you don’t already have an account with Everyclick it only takes a couple of minutes to set one up.
  2. Remember to choose Aniridia Network UK as your favourite charity when setting up your account and then you are ready to go!
  3. You can then browse Give as you Live to select a store and click on ‘Shop now’ to visit the stores website and make your purchases.

To make things even simpler you can download the Give as you Live add on for your browser which will automatically let you know when you visit a participating Give as you Live retailer to give you the option to raise money with your purchase.

Don’t forget you can use Give as you Live all year round too and it’s not just shops which are  included. It’s also worth a visit if you are thinking of changing your

  • utility supplier
  • mobile phone provider
  • insurance company
  • or even booking a holiday.

For more information visit Give as you Live.

Happy shopping!

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Protected: Being an exam subject

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Harry wins teen “Caring For Others” award

A boy with aniridia has won an award for his caring nature. Harry, 16, from the Exeter area won the “Caring For Others” category in the Teen Awards run by the Exeter Express & Echo newspaper. The awards “show that teenagers are some of the leading members of our community – but that their efforts too often go unsung.”

Harry was nominated by a tutor at his school for being “caring and considerate to all”, for example helping a peer who is a wheelchair user. His mum Becki said she was “very proud”.

Harry and his family are part of Aniridia Network UK. We’d like to take this chance to add our congratulations to him.

Read more about Harry’s award

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Protected: Jenny’s career – Part 2: Looking for work

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