Four days until guide dog number 4

Posted on May 19, 2012 by Beth Dawes

It’s four days until I travel to Edinburgh to train with guide dog Annie. I can’t believe she will be dog number 4 for me in 9 years. People always ask ‘What happened?’. It’s always easy to say Berry had a career change because she didn’t like being a guide dog. I have had to come to terms with the fact that because she went to Dogs For The Disabled I will probably never get to know when she passes away. She will be 10 in September. Sandie has arthritis in her elbows and hips and considering her heavy workload did well to work until her 8th birthday. She lives with my mum and I see her often.

Connie is number 3 and I think will always be the hardest to talk about and explain. Usually I stick to ‘She was very poorly and can’t work any more.’. It’s not only that she worked for 13 months but also because our first walk could have been our qualifying work, we just clicked. It was horrible to watch her be so poorly, leaving her for emergency surgery not knowing if she would survive and then nursing her back to health. I know ultimately it was the best decision for both of us and with time it will get easier.

For the past 6 weeks we haven’t had a dog in the house. It’s been very quiet indeed. 4 weeks ago I received the most unexpected call to say they had a match for me. I expected to wait months because I had been so lucky and only waited 2 weeks for Sandie and 4 weeks for Connie. 5 days later they brought Annie to meet me.

The matching visit

Each matching visit with my dogs has always been exciting and nerve wracking. My strongest memory is of Sandie bouncing on two feet like Tigger on her matching visit and I was wondering what kind of a crazy dog they had brought me.

So on to the arrival of Annie…… First of all the Guide Dog Mobility Instructor (GDMI) always comes in and talks a bit about the dog. It’s always difficult to remember that bit because you are thinking ‘Hurry up! Get the dog out if the car!’

When Annie came in she was a typical shepherd and ignored me. She did a big busy in the garden. Feeling her she was like a golden retriever in size, body and ears. Her face, markings and personality are very much German shepherd. I immediately thought she was dinky she is in between the size of Sandie (27kg) and Connie (32kg).

We chatted some more and then I put the harness on. I immediately found out she sits at doors, stairs and kerbs. Quite a change for me. Berry and Connie stood and Sandie sat for about 1 week when they decided she hated it.

We set off at a very good speed which I am not sure the GDMI thought I would keep up. I did keep up thanks to my running with my personal assistants keeping me fit. That’s the thing with a cane you are really limited speed wise and so it can take a while to build up fitness again when you get a new dog.

The walk was good although I learnt I am using old commands so I need to brush up on my skills during training.

When we returned to the house Annie had some water then helped herself to a kong wubba and chilled out in the dog bed. She even licked my face which apparently means I am very honoured. It seemed like she was quite happy to stay. I took some photos to help me through until training and then they left.

So here I am with four full days until Wednesday. It will be my longest training so far and my first time in a hotel. I will write more about that another day.

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Conference 2012 preview

Posted on Apr 28, 2012 by katieanuk

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.

  • Are you coming to the conference?
  • What are you looking forward to most about it?
  • What do you hope to get from it?

Leave you thoughts as a comment below

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Donate to Aniridia Network UK via ebay

Posted on Mar 11, 2012 by Aniridia Network

ebay for charityDo 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.

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Sunglasses wearing dog has anirida

Posted on Mar 10, 2012 by Aniridia Network

White long haired dog wearing sunglassesIsn´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.

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Aniridia Europe board meeting and networking event

Posted on Mar 9, 2012 by katieanuk

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.

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Peter and Lyn include Aniridia Network UK in their wills

Posted on Mar 8, 2012 by Aniridia Network
Family photo in front of their house

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.

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Invitation to the Oslo Aniridia Conference

Posted on Mar 7, 2012 by Aniridia Network

Aniridi Norge logoAniridi 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.

Sunday 10 June

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.

Friday 8 and Saturday 9 June

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

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Natasha and Violet: fundraising and media stars

Posted on Mar 6, 2012 by Aniridia Network

 

Baby dressed in pinkNatasha, 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.

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Prepare for Rare Disease Day: Wednesday 29 February 2012

Posted on Feb 25, 2012 by Aniridia Network

Rare but strong together

Rare Disease Day: February 29 2012

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:

Tell your story to the media

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.

Lobby your politicians for better support

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

Other ways to show your support for Rare Disease Day

  • Follow on Twitter: @rarediseaseday.
  • Join the Facebook group and event and make your profile picture the Rare Disease Day badge.
  • Share the excellent video with friends and family
  • Become a friend or share your photos and videos on the website.

Fundraise for Aniridia Network UK

Charity cake sale. The Biology Society is holding a cake sale to raise money for Aniridia Network UK. Friday 12 February . Porches at break.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.

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Dr Agarwal describes using a glued iris prosthesis

Posted on Feb 13, 2012 by Aniridia Network

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

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