I (Aniridia Network UK Chairperson Katie) was interviewed on Insight Radio about our upcoming conference. Have a listen:
Insight Radio is the radio station of the RNIB. You can listen to it online or if you have satellite TV on Sky Channel 0188 or Freesat Channel 777. We are very grateful for their help with promoting our event.
Leave you thoughts as a comment below
Do you buy or sell on eBay? Now you can and raise money for Aniridia Network UK at the same time.
We’ve registered with Mission Fish – ebay’s charity partner website. So now you can sell an item on ebay and donate between 10 and 100 per cent of the proceeds to us – including adding gift aid. You save on the sellers fees too!
To get started add Aniridia Network UK as a favourite charity on your ebay account. Then in ebay click on “Sell” and choose the “Advanced sell” option. On the following screens you’ll be prompted to choose a charity and percentage to donate. The fact that you are donating will appear on your listing to make you look good and publicise us too.
There are fees charged. From the combined donation and the gift aid on it, they take 9%. The rest is passed to us. You’ll also get a refund on the selling fees equal to the percentage you promised to donate.
But you don’t have to sell something. You can also use Mission Fish to simply donate using PayPal. For this there is a fee of 3.75% of the net amount donated (3% gross – the donation plus gift ad).
This actually compares very favourably with Everyclick (4.8% net, 3.8% gross) and Charity Giving (3.9% net, 3.1% gross).
Do you have anything laying around that you don’t need and someone else would pay for? Next time you want to get rid of something, think of ebay and think of us too.
Isn´t this dog cute, with its sunglasses? She has aniridia!
Rosa from the Spanish aniridia association happened to meet, Ana, a generous person who adopted this abandoned dog as her pet – nobody else wanted it because it had aniridia. It is now happy with sunglasses and does not take them off!!
Ana was grafefull to learn more things about aniridia to better understand her dog. Now Ana understands why this dog has difficulty seeing steps and always walks following her other dog.
After the establishment of Aniridia Europe its board members met in Paris on 19 and 20 November 2011. It was a chance to meet face to face and also for new members from Germany and Bulgaria to meet us all for the first time.
We were lucky enough to receive a grant from EURODIS (the European Rare Disease Alliance) to help with the cost of funding the meeting. Aniridia Network UK received €300 of this to help us send a representative – our Chair, Katie Atkinson.
To begin with we all updated each other on the progress of our own organisations and swapped hints and tips on how to run an aniridia group. This was particularly useful for those who have just created an organisation or are trying to set one up. We then discussed the running of Aniridia Europe and how it will be funded. Each member organisation will be expected to contribute what they can but Aniridia Europe will also need to raise some funds of its own.
Next we received an update from Aniridia Norway about the medical conference on they will be holding in June 2012. It should be great opportunity for doctors and researchers to interact and learn from each other and stimulate an interest in aniridia amongst the medical community. The UK should be well represented with several British doctors and researchers being invited to speak.
On Sunday we reconvened to discuss how we can publicise Aniridia Europe and raise awareness of aniridia. We developed ideas for publicity materials such as leaflets and also discussed how to improve the Aniridia Europe website. Finally we discussed how we go about forming a scientific committee to help with our aim of encouraging more aniridia research across Europe.
For me it was great to see everyone again and to hear the stories from others – to know that we all face the same challenges but also to know that we are not alone in trying to overcome them.
Peter, Lyn and James
By Peter and Lyn
Having recently retired, our thoughts turned to updating our wills. We have always been extremely grateful for the support and advice we received from others when our son James was diagnosed with aniridia back in 1979. Back then there was very little information around and as it is a rare condition we struggled to really understand what the future held and what we could do to best support James as he grew up.
If Aniridia Network had existed at that time, there would have been so many more people we could have shared our thoughts with and we would not have felt so alone. So with this in mind we have made a decision to leave a legacy in our wills to Aniridia Network UK and the RNIB.
We will also be making a regular donation to Aniridia Network UK to support their work- after all you can’t take it with you!
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Aniridia Network UK is extremely grateful to Peter and Lyn for their generosity and forethought. Why not set up you own regular donation to us right now online? And please think of us when writing your will too.
Aniridi Norge (the Norwegian aniridia association) has organised the first European scientific conference about aniridia as well as an international gathering for the aniridia community. You are invited between 8 and 10 June 2012. James and Katie from Aniridia Network UK plan to be there.
On this day there will be a programme tailored to families and individuals with aniridia – including children and young people. It costs £73 (Norwegian Krone 650) including lunch and refreshments. There’s an opportunity for an eye examination too. Places are limited so it is primarily for the Norwegian delegates. But to request a slot, send an email conference2012@aniridi.no stating: the patient’s name, age, visual diagnosis and an explanation of why they should be offered an appointment – no later than 31 March 2012.
There will be a traditional conference for medical professionals on these days. The language will be on a rather high technical medical level. However, non-professionals who want to watch and listen (they may not get involved in discussions or ask questions), are welcome to do so. The fee for non-professionals for these two days is £146 (NOK 1300) including lunch and refreshments.
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Aniridi Norge will hold their annual meeting in Oslo on the same weekend. Everyone is most warmly invited to participate in it, exchanges of experiences and social activities. They will try to be as flexible as they can and have some activities in English.
There is no cost for participating in the aniridia community gathering if you do not take part in the conference programme. Unfortunately there is no possibility of subsidising any attendance or participation by international guests.
Rooms have been reserved for members of the aniridia community on 8 and 9 June at the Rica Holberg Hotel, starting at about £108 per night. You can book these through the registration page. If you are a wheelchair user, to book email liv.torunn.berg@meeting-management.no and explain this. The conference activities will be at the neighbouring Radisson Blu Scandinavia Hotel.
For more details and to book visit www.aniridiaconference.no
Baby Violet (credit Halifax Evening Courier)
Natasha, mum to Violet with aniridia responded to our calls for fundraising and media volunteers.
She’s been holding raffles and selling goods via Facebook in her home town of Halifax, West Yorkshire. The current drive is for Easter eggs and Mothers day hampers. So far she’s raised over an amazing £400 for Aniridia Network UK.
Around Rare Disease Day a journalist visited them both. She tweeted that Violet was “the cutest person I’d met all week“. On Friday Violet was on the front page of the Halifax Evening Courier.
The article was one of the best we’ve seen about aniridia. The facts about aniridia are generally accurate and it’s fairly positive, balancing the parental concern and stress with hopefulness and support available.
We’d like to say thank you very much to Natasha for stepping up like this. It’s thanks to people like her that the aniridia community so strong. We hope it inspires other to follow her example. Contact us if it does you.
A rare medical condition affects less than 1 in 2000 people. Aniridia affects about 1 in 100,000 people. Even fewer have WAGR/11p deletion syndrome making it ultra-rare.
But collectively people who have rare conditions are not rare – 1 in 17 people (3.5 million people in the UK). They have common needs and experiences.
For that reason Aniridia Network UK (ANUK) is a member of Rare Disease UK (RDUK). With others around the world we’re celebrating Rare Disease Day - on the infrequent leap day 29 February. The day’s theme is solidarity with the slogan “Rare but strong together”.
Check out the Rare Disease Day website for ways you can get involved.Here are some key ones:
RDUK will be trying to generate media coverage to raise awareness on the day. It helps if they have patients or family members affected by rare conditions who are willing to tell their story. If you are willing to do this, fill out their media volunteer form (Word document).
Send completed forms to RDUK and a copy to ANUK.
As an aside, if you are ever talking to the media about aniridia please mention ANUK to help raise our profile, particularly for those who may not have heard of us.
Look out for the supplement about Rare Disease Day in the Independent newspaper similar to last years supplement.
Consultation on a UK-wide plan for dealing with rare diseases has been promised by the Government for months but delayed.
Rare Disease UK say “We would be extremely disappointed if the health departments failed to launch the consultation on [Rare Disease] Day, and we would begin to question their commitment to the plan to improve services and facilitate research into rare diseases.”
It has been over 2 years and 9 months since the Government signed the European Recommendation committing them to develop a plan. And it’s been a year since RDUK published recommendations to inform the plan in their report Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy
So use the coming of Rare Disease Day to write to your local politician calling for no further delays to the plan. RDUK have been doing this but as their constituent, you have the most influence over them.
Template letters and information on who to contact and how
Use Rare DIsease Day as a hook for activities to raise money for Aniridai Network UK.
For example Abigail Heather in Durham recently raised £134 by holding a cake sale! Our thanks go out to her.
For more ideas like this visit our Support us web page. Let us know of any plans you make.
Ophthalmic surgeons have described various techniques to fix iris deficiencies. For the most part, these improve the patient’s visual quality. In this column, Dr Agarwal describes a surgical technique of using a glued iris prosthesis, namely a PMMA aniridia intraocular lens (IOL) implant.
Source: Ocular Surgery News
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.
Aniridia Network UK
Beth Laskey
katieanuk
Jenny
James
Laura
Sinead
