London/SE Birdshot Friends First Meeting

Last Saturday we had the first meeting of London/SE Birdshot friends and 18 people attended including some friends only recently diagnosed.

We spent a lot of time talking, exchanging experiences and debating ideas, and eating sandwiches and cake!

Some of the main points to come out of the meeting were:

  • Carrot Walk – we need 30 volunteers to join the Fight for Sight Carrot Walk to help us raise funds for research.
  •  Vitamin D – some friends reporting positive results from taking Vitamin D.
  •  High Street Opticians – identified by many friends as being a week link in the chain of diagnosis which can delay treatment. We are looking to find ways to improve the education of opticians.
  •  Volunteers to help educate medical staff identify Birdshot – we are going to compile a register of Birdshot Friends who would be willing to volunteer to let medical staff examine their eyes to familiarise them with Birdshot as and when required. Please let us know if you would be willing.
  • Volunteers to accompany patients to appointments at Moorfields – Appointments can be quite daunting on your own when you are first diagnosed with Birdshot.   We’d like to build up a register of  anyone willing to accompany newly diagnosed patients.  We have had a few offers from people willing  to do this already.  Do please get in touch with us if you would like to help new diagnosed people in this way.
  • Volunteers for Hypnotherapy sessions – Lorraine is doing a degree in Hypnotherapy and would like volunteers for case studies, others on her course would also be keen for volunteers across London & SE. Hypnotherapy is well known for helping stress and so could help all of us! Please e mail BUS if you would like to be involved and we will pass on your details to her.

The next meeting will be in June and we will let you know more details nearer the time and hope even more Birdshot friends will be able to attend.

Join BUS and Fight for Sight on the “Carrot Walk” and raise funds for Birdshot Research

 

Fight For Sight (FFS) is a large charity that funds research into eye diseases. They have often concentrated on eye diseases that affect a large number of people. However, they are now looking at how they can help fund-raise for rare diseases and small charities.

FFS have offered us a place on the programme they are developing for small charities and rare diseases, subject to us finding enough volunteers to qualify.

Here is how it will work: FFS has set up a 15 mile London Nightwalk on 21 September, 2012, starting at 11 pm.  If BUS can find 30 people who are willing to pay £25 each to participate in the 15 mile night walk, and are willing to find sponsors for their walk (each person needs to be sponsored for at least £150), then all the money these people raise will be banked with FFS specifically for research into Birdshot.  This means that, if we manage to get our biobank set up, then researchers who want to use the biobank samples for research into Birdshot can apply to FFS for a small grant to fund the staff and other equipment for that research.  Exciting!!!

Before we can accept this offer, we need to be sure that we can find 30 people.  We are approaching all our members and all ‘Team Birdshot’ (which includes consultants, nurses, low vision experts, etc) to see if we can find the 30 people.

Could you let us know as quickly as possible whether you want to/are interested in undertaking this 15 mile London night walk?  FFS is expecting a very big turn out for this event, and we would really like to participate if at all possible.  21st September is a Friday night, so we could have the week-end to recover!  We might have to wear some silly clothes for the walk – maybe we can all go dressed as birds!

Please, please let us know as quickly as possible whether you want to be involved in this, so we can get back to Fight For Sight.

 

Rea

Easy Fundraising continues to raise funds for BUS

Birdshot Uveitis Society supporters raised £118.43

with easyfundraising & easysearch!

There are 13 of us signed up raising money via Easy Fundraising and we have just received a cheque for £37.68 for doing our on-line shopping via the Easy Fundraising website.  This brings the total raised since we signed up about a year ago to £118.43.

We’d like to thank the people who have decided to help us via Easy Fundraising.  It’s simple, painless and it doesn’t cost you a penny more than you would otherwise be spending on yourself and your friends and families, especially at this time of year when you are Christmas shopping.

The Easy Fundraising site  is an excellent, easy, on-line way to help raise money for future research and Birdshot days, while you do your normal on-line Christmas shopping and it doesn’t cost you anything extra. Retailers such as Amazon, Next, Argos, John Lewis, Comet, iTunes, eBay, M&S  and HMV, Clarkes all give money when you shop-online via Easy-Fundraising. You shop directly with the retailer as you would normally do, but if you sign up to http://www.easyfundraising.org.uk/bus for free and use the links on the easyfundraising site to take you to the retailer before you shop, then a percentage of whatever you spend comes directly to us at no extra cost to yourself. This service is FREE to use and will give you access to hundreds of exclusive discounts and voucher codes, so not only will you be helping us while you buy your Christmas presents, you will also help to save money yourself

Quinn Wilson Associates raise Money for BUS

 Kerry Quinn is an amazing, energetic and inspirational person who constantly thinks of others.  She set up Quinn Wilson Associates which specialises in using digital and social media to market organisations to help them become more successful.

On Friday 23rd September, she organised a small social media event at my local art gallery, Lemon Grove in Chiswick, London, and I was invited along.  I have to say I was in total awe of Kerry and her stunning social networking skills.  She is one of the nicest people I have met, and she spent a lot of time with me, giving me advice about how to use digital and social media to improve BUS.

Even better, she held a raffle and decided that all the proceeds would go to BUS – what a wonderful person!

The raffle prizes were a voucher for a hair cut and design at Tony & Guy (thanks to Tony & Guy, Chiswick for donating this) and a wonderful book of paintings by Fabian Perez, a very prominent artist (donated by Silvana Bedford at the Lemon Grove Gallery, Chiswick)

The raffle raised £124.  This adds to our growing pot of money for our next Birdshot Day on 3rd March 2012.

The whole event that Kerry organised was really helpful, as I met so many people who have offered their time for free to help me learn some new skills. and Kerry has said she will think about whether there are other ways in which she can help BUS.

If you want to find our more about Kerry, her website is at

http://www.quinnwilson.co.uk

And if you want to find out more about the Lemon Grove Gallery in Chiswick (Silvana has been so supportive of me, particularly when I was at my worst on medication and struggling to even get the shopping done – Chiswick is just full of wonderful people) her website is at

www.thelemongrovegallery.co.uk/

Team Birdshot just keeps growing and growing!

While I was at Kerry’s networking meeting, I met a solicitor, Eilish Adams from Adams Law and she told me about an interesting scheme called WillAid where, in the month of November, you can seek out a participating solicitor and make your will in exchange for a donation to charity.  You can find out more about this scheme at  http://www.willaid.org.uk/

Rea

Volunteer help for BUS

We’d like to introduce you to some of the people who provide voluntary help to BUS.  All of these people either have Birdshot, have a partner or family member with Birdshot or have a professional interest in Birdshot.  It is wonderful the way this has just evolved, and it helps to make BUS a powerful tool for developing a Birdshot community. We are truly grateful to everyone who is involved with BUS.

Lori Bonertz is a Canadian pharmacist and medical editor living in northeastern British Columbia. She edits manuscripts for Dr David Mackey, a specialist in the genetics of eye disease, with a focus on glaucoma. She became interested in birdshot uveitis when a well-informed patient at her pharmacy had questions she couldn’t answer. While scouring the internet, she found the helpful UK BUS website. Her particular interest at work is smoking cessation. She and her Australian husband have four children and they enjoy skiing, hiking, and watching the UK series Top Gear and Sherlock Holmes.  Lori is helping us to make sure that all our news items on research and trials are accurate.

Hamamelis,  a retired pharmacist from the Northwest of England, recently edited  the Birdshot Chorioretinopathy fact sheet for us and has volunteered to proofread future fact sheets.  These two people provide us with our pharmacy expertise – without them, we would never be able to write informative news items for you.

Sue from Lincolnshire is talking to her local ophthalmologist from Hull Hospital to try and find ways of raising Birdshot awareness locally.  She has approached her GP, talked to her local optometrist and made approaches for us to the UK lottery fund for future Birdshot Days.  Sue would value help from others in the Lincolnshire and South East Yorkshire area who want to join forces with her in this initiative.  If there are enough people – (at this stage we don’t know enough in the locality), a local support group could also be formed.  Anyone interested in this should let us know and we will pass the details on.  Hopefully, this will be the first of many local support groups.  If there is anyone else who wants to start a local support group, I am sure Sue will be able to advise – she is brilliant at getting local people interested.

Steve is looking at producing a map of where our members are – we will then be able to see the geographical location of all members.  Currently, all we are able to analyse is what geographical location people access BUS from. Once Steve has completed the mapping, we can use this to look at whether there are ‘pockets’ of Birdshot, and what the implications of this might be.  Thanks, Steve, for progressing our research agenda.

Sandra has been gathering items together to hold a a raffle for BUS amongst her friends and local community.  She enjoys  making hand-made cards and has found that they have sold really well.  We are just about to receive a cheque from her.  Thank you, Sue for developing our first ever fund-raising initiative.  You are an inspiration.

And of course, David our Graphic Artist continues to produce stunning artwork for us. His latest triumph is the label and packaging for the Birdshot DVD. We have other projects where we hope he will assist us into the future.    David’s design skills have really helped us launch Birdshot Uveitis Society  across the world.  Everyone who comes across BUS comments on the very eye catching and effective logo!

Every small initiative helps raise the profile of the Birdshot Uveitis Society and Birdshot Chorioretinopathy.  We have just highlighted a few initiatives more to follow!

We have also started to notice that people with Birdshot do seem to be a very highly skilled group of people – just look at all the initiatives above.  What a powerful and inspirational group of people we are!!!

 

Easy Fundraising!

We’ve just banked our second cheque from Easyfundraising and are  pleased to announce that we have raised nearly £65.00 from the 7  people who have signed up for this simple way of doing normal on-line shopping.   Thank you so much to those seven people for signing up!

It might not sound like much, but every penny counts and if all our members decided to shop this way, it would soon mount up!  It’s  an easy and free way for you to support Birdshot Uveitis Society.    The brilliant thing about this way of giving  is that it doesn’t cost you a penny.

We’ve teamed up with Easyfundraising who provide a shopping directory listing some of your favourite online stores. Hundreds of popular retailers are participating including ArgosNextDebenhamsJohn LewisToys R UsM&S and over 2000 others.  You can buy anything from books, DVDs and clothes,  to larger items like  washing machines and computers.    It’s also  great for buying Birthday and Christmas presents.

All you need to do is use the links provided on the easyfundraising site whenever you shop online. The retailer will then give Birdshot Uveitis Society up to15% of every purchase you make – it’s that simple!

It doesn’t cost a penny extra to shop and raise funds in this way, and you can even save money as many retailers give exclusive discounts, special offers and even ‘e-vouchers’ exclusive to easyfundraising.

If you already shop online why not help raise extra funds for us by using this completely free service? Follow the instructions below to find out how.

It is as easy as 1-2-3 and it’s FREE!

1. Go to www.easyfundraising.org.uk/causes/bus and register for FREE!

2. Once you are registered, use the links on the easyfundraising site to go to your favourite online shops and shop in the usual way.

3. Every time you shop online, log on to www.easyfundraising.org.uk and use their links to visit your favourite shops.

Please encourage your friends and family to sign up too and raise even more money for Birdshot Uveitis Society.

That’s all you need to do – apart from remembering to return to our site next time you are going to shop online!!

Providing you login and use the retailer links provided we’ll track all your transactions and pay your nominated cause the appropriate donations. These will then be displayed in your easyfundraising account (which you can access online).

If you have any questions or require further assistance please see the Easyfundraising  FAQ section.

 

 

London Marathon – Ken’s amazing feat

Just to let you know that Ken Fitzmaurice (who was running for UIG and BUS via Fight for Sight and raising money for Dr John Curnow and Professor Phil Murray who are researching the causes of uveitis) completed the course in under 4 hours (he did flag a little at the 30 km mark – he blames the heat!).

So far, he has raised just over £1,200 and our target is £2,500, so we really want to keep raising money. With this in mind, Ken has decided to run the Dublin marathon in November – so please, please dig deep and donate to this amazing cause, which may find a cure for all of us! For those of you who have donated, thank you so much.
Rea

Stem cell therapy may well restore sight

http://www.telegraph.co.uk/health/healthnews/8376433/Stem-cell-injection-reverses-glaucoma.html

The link above takes you to an article on how stem therapy might be able to help people with glaucoma in the future.

Rea and I are not experts on this, but we are assuming that if stem cell therapy can grow retinal cells for people with glaucoma, the same could be true for people with Birdshot.

It’s a “brave new world” development and we need to monitor and watch this development closely.  It could give hope to people with sight loss who, until now, thought there was nothing that could be done.

The Cambridge scientist and ophthalmologist involved in the research, Professor Keith Martin said:-

“We are doing it in animal models and results are so encouraging that we hope to move forward to testing on humans soon.

Stem cell treatment is moving forward very fast in many branches of the medicine and we are seeing some of the best results in eyes.”

He added: “We have concentrated on glaucoma because it is so common, but there are quite a few diseases that affect the optic nerve, such as inflammatory diseases, so it could be used here too.”

As we all know Birdshot Chorioretinopathy is an inflammatory disease of the eye. We don’t know how long these developments will take to progress, but we live in a fast moving world and it gives us hope.

This research has received funding from Fight for the Sight, a charity that raises money for research into sight threatening conditions.  We have a runner running for us in the London Marathon in aid of Uveitis Research that Fight for Sight is also supporting and if you want to make a donation towards this project you can do so at Ken’s Just Giving page. http://www.justgiving.com/Kenneth-Fitzmaurice

Annie and Rea

Moorfields Star awards Birdshot winner

About 220 staff and their friends and family members attended the annual Moorfields’ Stars ceremony on Wednesday 2 March. The event, which again received overwhelmingly positive feedback from those involved, was designed to recognise and reward staff for personal and professional achievements.

group-stars

Special awards were presented in recognition of academic success and long service as well as to the winners of the employee of the month scheme during 2010. Awards were also given to the winners of four special categories with the Birdshot Uveitis Patient Day Team receiving the Special Trustees’ team award for innovation in patient care, research or education.

We are absolutely delighted with this news particularly as we received a £1000 donation from the Special Trustees to go towards our next event.  This is great news!

At the risk of repetition:  “Long live Team birdshot!”

Give via your on-line Christmas shopping

Thinking about doing your Christmas shopping online? You might like to use the Easyfundraising site to do this. This is an excellent, easy, on-line way to help raise money for future  research and Birdshot days, while you do your normal on-line Christmas shopping and it doesn’t cost you anything. Retailers such as Amazon, Next, Argos, John Lewis, Comet, iTunes, eBay, M&S  and HMV, all give money when you shop-online via Easy-Fundraising. You shop directly with the retailer as you would normally do, but if you sign up to http://www.easyfundraising.org.uk/bus for free and use the links on the easyfundraising site to take you to the retailer before you shop, then a percentage of whatever you spend comes directly to us at no extra cost to yourself. This service is FREE to use and will give you access to hundreds of exclusive discounts and voucher codes, so not only will you be helping us while you buy your Christmas presents, you will also help to save money yourself.

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