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Beer festival and a 52 mile walk to fundraise for birdshot

BUS members’ October fundraising
Birdshot beer bash

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Clare Wood from Newcastle held a beer festival for us, and above and below are a few pictures that set the scene.  By all accounts it was a very jolly occasion for fellow birdies, their friends and families and work colleagues.

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Birdshot helpers

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Birdshot bar staff

 

 

 


 

 

 

 

Here is a message from Clare:   “Just a quick update on the fundraising beer festival. We are now at £2833 which is fab. Thanks to Sharron, Barrie, Debbie, Annie, and David and Carly for their help with prizes, flags and designs. Ella (my daughter) also raised £600 doing the Great North Run recently.”

BUS hopes that this might become an annual event, like the Birdshot Shoot.  Despite the massive amount of work Clare put in organising it, she has already said she will be in touch next year when (we hope) she may do another one!

52 miles for Birdshot

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Barrie Standish and his friend John are two keen fitness fanatics in the North West of England who thought they could easily manage a 52-mile stroll for birdshot.  The aim was to promote the eye condition and raise a bit of money along the way.

On Friday October 21st, just after lunch, they set off on their route.  They walked from Glazebury, going through Lymm, Knutsford and Holmes Chapel. They walked 26 miles out and returned the same way. They set off at a brisk pace, and by evening time it was obvious that they would be walking through the night.  It was not as easy as they had imagined.

The following morning at 6.02am, Barrie’s wife Debs reported on Facebook:  “He is home now and tucked up in bed. His words: NEVER AGAIN…. So proud of them. Thank you to all who have sponsored for this amazing achievement…He will suffer when he tries to get out of the bed.  I am sure there could be less challenging ways, but that’s Barrie!”

Barrie commented afterwards to his birdshot friends who had supported him online through the night: “Thank you so much for all your support and donations, really, really appreciated your well wishes, it went a long way in helping us keep going through the night. I can honestly say that I have never done anything that hard in my life! We had to dig deep and then find some more from somewhere. The last seven hours were purgatory. John lost the skin on both feet and toes, and I’ve got away with 3 blisters.  My legs are absolutely battered, I’m lying on the couch not knowing what to do with myself, it’s the tendons at the backs of my knees, I can’t straighten them properly, walking around like Max Wall.  Never ever again.”

But we say: watch this space!

Barrie raised nearly £1,000 from his walk which is a fantastic total.

What a fabulous couple of fundraising events from the north of England! Thank you all for your great efforts. BUS will be putting all the money raised from these two events towards future birdshot research.

Publicity

Fabulous fundraising up Kilimanjaro

Summit Photo of Martin and IThe operations director and senior contracts manager from John F Hunt have just come back from Tanzania having achieved a midlife objective that they had set themselves earlier last year, to scale Kilimanjaro the highest mountain in Africa, and highest freestanding mountain in the world. They have also achieved their magnificent object of raising circa £20,000 for research into Birdshot. The plan was hatched many months ago and the first we heard about it was an email from Charity Challenge, the organisation who organised their trip, telling us of Bill and Martin’s plans. Bill and Martin know something of the problems that Birdshot can bring because their company’s MD just happens to have Birdshot.

Here is a first hand report of the expedition that we have just received. Bill picks up their story:-

“The trek began at the Rongai route entrance of the Kilimanjaro National Park. Our group, which consisted of 21, equally stupid… I mean intrepid trekkers, made our way over the next 4hrs at a rather pedestrian pace set by the porters to the Myers Camp Site at 2760 mtrs above sea level. “This is going to be easy” we thought!

The night was spent camping under the African night sky which was beautifully illuminated by the seemingly endless number of stars. Fantastic. Unfortunately sleep was not quite as fantastic as it seemed it would be as our tents and mats that had previously been set up by the porters had been placed on top of all the rocks and stones that they could find! and I would say that 2 hrs sleep max was all that was had.

The next day saw us rise at 6am to calls of “washy washy”?? The porters bring round a small bowl of warmish water for each person to wash in. Well, this is where reality hit home. This isn’t going to be a 5 star lavish experience and any dignity you may have wanted to reserve soon goes out the window in the course of trying to keep as clean as possible! Enough said.

Breakfast is served at 7am and consists of porridge, toast, eggs and more porridge, plus tea & coffee.

Following breakfast we then set off again and over the next two days, trekking for around 8-10 hrs a day we pass through Kikelewa Camp (3600 mtrs) and onto Tin Hut Camp (4200 mtrs), which is at the base of Mawensi mountain. This camp is a proper dust bowl and is situated in what can only be described as a desert type landscape, very barren and quite bleak. However, the view of the Mawensi peak above is cracking and quite awe inspiring.

Upon arrival at Tin Hut Camp, we take lunch, as we do everyday at around 1-2pm. This is a hot lunch and is generally a rice or pasta dish and in all honesty considering where you are the meals are not bad.

Following lunch we go for an “acclimatisation climb” for 2hrs which takes us to a ridge midway up Mawensi and to an altitude of 4420mtrs.

By now most of the party are experiencing some form of altitude related sickness. This materialises in the form of headaches, nausea, dizziness and breathlessness.

A number, if not the vast majority of the trekkers, myself and Martin excluded however, have opted to take Diamox which is medication which helps overcome the effects of altitude. We decide to tough it out as we suffer from “real man syndrome”, which probably means we have cut our nose off to spite our face!

We stay at the camp again that night, which is the only time you spend two nights in one camp and the following morning we head off on another acclimatisation trek, this time to the snow capped ridges of Mawensi, which takes us to an altitude of 4700mtrs.

At this altitude you definitely notice how out of breath you quickly become, particularly if you try and move too fast. The porters, from day 1, have repeated the words “poly poly”, which mean “slowly slowly” and I now appreciate why they purposely set the pedestrian pace to start with, which is in effect to get you used to it for later and the summit climb.

The following morning we head off on a 4hrs trek across what they call “The Saddle”, which is the flat stretch of land between the base of Mawensi and the base of Kilimanjaro. This is approximately a 9km walk which is across open, desert land and which takes us to Kibo Camp from where we will make our summit attempt later that evening.

Well, this is it. After dinner we are told to go to bed early and get a couple of hours sleep as we will be woken…….yeah right as if you can go to sleep, at 11am to prepare for the summit climb at midnight.

On Wed 11th February at midnight and following a quite serious briefing from our trek guide we finally began to climb/trek Kilimanjaro. You head off in a line and slowly zig zag up the mountain. In all honesty all you have to do is get yourself “in the zone” and simply focus on the pair of boots in front of you and follow on relentlessly for what seems an age. At one point I felt particularly dizzy and seemed to hallucinate also for a short while but you slap yourself out of this and continue. Martin I know found that his breathing was particularly laboured and had to dig deep to maintain progress.

Many of the others in our party were struggling to cope with various symptoms of altitude sickness and the neat line of trekkers soon became separated and distanced from one another as the individuals pace slowed to allow them to cope or not as the case may be. The porters, guide and doctor at this point were superb in recognising people having difficulties and ensured that they were encouraged to rest, eat and drink accordingly, to allow them to continue…hopefully.

Around 6am, mid way up Kilimanjaro the night sky changed and deep orange peaked over the horizon as the sun rose. This lifted the spirits no end and once the sun rose clear and the day brightened and blossomed the view across Tanzania and the neighbouring plains of Kenya was awesome and unforgettable.

Eventually we reached Gillians Point (5685 mtrs), which is known as the false summit, around 12 hrs after setting off. However, we were then informed that the true summit, Uhuru Point (5895 mtrs), was further around the rim of the crater and another 210 mtrs higher in altitude. This actually only looked a very short distance but proved to be a further 1 ½ hrs away and which was bloody tough going due to the reduced oxygen levels! This literally was take a laboured step and take a breath, take a laboured step and take a breath. Poly Poly !!

When Martin and I got there we were pretty knackered but ecstatic to have reached our goal. It’s a fantastic, satisfying and a quite overwhelming and even emotional feeling.

Attached is a photo of Martin and I at the summit, this is the shot we wanted and which we had trained for since April 2014 when the trek was originally organised.

After spending only probably 15 minutes at Uhuru Point we began the long decent back to Kibo Camp. All in all from the time we started the climb to the time we got back to camp it took 20hrs. Quite a mission. To cap it all, once back at Kibo, we were told that we then had to trek back across the saddle for another 4hrs to another camp site where we would spend the night, prior to one more 18k trek the next day back to the Rongai Gate and a well deserved couple of beers !

That’s one off the bucket list….thankfully. What’s next, hmmm.

I would like to take the opportunity at this point on behalf of Martin and I and indeed the Birdshot Uveitis charity to thank again all who have kindly dug deep and sponsored the trek. We currently, without taking into account the gift aid, have raised £18,860.00 but have another 3k approx pledged and therefore expect to exceed the £20.000 mark before the Just Giving Page closes in two weeks time. This is absolutely brilliant, well done everybody.

If, reading this, you feel inspired to contribute, you can still do so by googling:- www.justgiving.com/johnfhunt where upon it will become apparent how to post your donation.”

Publicity

Birdshot Day Poster – Saturday 14th November 2015

Here is the poster to advertise our forthcoming No 3 Birdshot Day on Saturday 14th November 2015.   The poster has been designed by  David Bethell, one of our trustees and directors, who is also a graphic designer.  As before, David has given his time for free.  M3 Global who are the healthcare marketing company that we helped earlier last year have sponsored the printing costs.  Thank you so much to you both M3 Global and David for their help with this.

If you would like to make sure the poster is put up in the hospital where you are treated, please let us know and we will send you a copy, so you can arrange this for us.  Publicity throughout the UK is most important, as we would like this to be the biggest gathering of people with Birdshot and people interested in the eye condition that has ever been held!

Details of the day and the programme will follow on the BUS website soon, with a link so that you can book your ticket to attend.    We can also email or post the information direct to.  Please get in touch with ub by email to info@birdshot.org.uk to indicate your interest in coming to the day.

The programme is well develped and we will already have some exciting speakers and activities organised. Please put the date in your diary!

Birdshot Poster Pompidou Transport MBP A4B

Publicity

Urgent your help is needed – Specialist Commissioning Debate

MPs are debating Specialist Commission this Thursday 15th January.  Please write to your MPs enlisting their support and ensuring that they attend this debate.

This is relevant to you because in the future Birdshot will come under specialised Commisioning  and we need to make sure we get good services. At the moment, the government is trying to squeeze funding away from specialised commissioning and you may already be aware that they are planning not to fund anti TNFs  (drugs like Humira and Infliximab) for people like us.

Below is a draft of a letter that you can alter as you wish to send to your MP.

Specialist commissioning letter draft

and a briefing paper which you might also like to send.

SHCA Briefing Materials for Westminster Hall debate on national commissioning of NHS specialised services – Jan 2015 specialist commissioning letter

Publicity

Getting the word out to opticians and optometrists

FD584 Logo Final copy image001Opticians and optometrists are a group of people BUS really want to reach as they are the normal port of call when something goes wrong with your sight.   In my own case I must have gone to different opticians complaining about various symptoms four or five times before one of them realised that there was  something wrong with my eyes and asked if I would like to be referred!

It was with great pleasure that we came across 2 websites for opticians and the public where there was a charity section and where our details could be added:

The “Local Optician” public site is reached by over a 1000 people each day and the “Primary Health Net” for professionals is read by over 7500 professionals, 4 x a month.  They are also going to announce our presence in their regular fortnightly newsletter to their professional members.

We also notice that a link to our website also appears in The Ask the Optician section on the Specsavers website.  specsavers-logo-gbenIt comes under the Eye Health section.   If you type Birdshot into the box it takes you to this link, which in turn provides our website address and the comment: 

“There is a web site devoted to this disease that has all the information you my need”

http://www.specsavers.co.uk/ask-the-optician/what-is-birdshot-chorioretinopathy/

It’s good to see that more and more opticians have now actually heard of Birdshot Uveitis and are taking an interest in it.  Reassuringly,  a growing number of BUS’s UK members have been referred straight to a uveitis specialist after their opticians examination revealed a problem.

 

 

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Carrots NightWalk 2014

BUS is delighted to announce that we are once again a partner charity involved in the Fight for Sight Carrots NightWalks. These fun night-time sponsored walks are helping to raise thousands of pounds for research to prevent sight loss and to treat eye disease. Fight for Sight small grants awards have already benefited birdshot research. Continue reading

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A patients perspective – does anyone want to tell their story?

BUS have been contacted by NB Magazine (the RNIB eye health and sight loss magazine for professionals), and asked if we have any member who might be interested in writing a short article about their experience of Birdshot Uveitis (just 800 words).    This regular column features  the experiences of people with sight loss, covering a different eye condition each time, and describing what it’s like to live with the condition, the support (or otherwise) they have met with along the way, including solutions they have found helpful and what constitutes an ‘ideal world’. It is also an opportunity to feature the work of self-help groups (ie will provide publicity for Birdshot Uveitis Society) .

If there are any members of BUS who would like to do this please get in touch with us as soon as possible.  Ideally they are hoping it can be done for 11th September deadline which is short notice!   info@birdshot.org.uk

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New Birdshot Uveitis Poster for Hospital Eye Clinics

BUS would like to support everyone who has been newly diagnosed with Birdshot.  We want them to know that BUS is here to see them through their Birdshot journey and to help them with useful information and practical advice.  BUS’s designer, David Bethell   has produced a clear, eye catching poster which should stand out well on the walls and display boards of eye clinics.

If you are prepared to be our postman to make sure that the poster gets displayed in your local eye clinic and ERG department, please let us know, and we can provide you with the poster for you to ensure it is displayed prominently in your clinic.  We know, from previous experience, that this is often a more effective way of getting the posters displayed.

You might like to ask your Optician or Doctors if they are also willing to display it. The poster’s size is A4 so it will not take up too much space on the clinics display area. You can help us to get Birdshot Uveitis better known by making sure that the poster can be seen!

Annie and Rea

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Help Us Make Birdshot a Priority For Research!

We are re-posting this, as the survey ends on 31 July, and we need as many responses as we can get, in order to make sure that Birdshot becomes a priority for research.  If you have not already done so, please complete this survey.  It is quick and simple to do.  We have posted some ideas about what kind of research is needed into Birdshot at the end of this post, to help stimulate debate, and give you some ideas.  Remember that the more people who respond mentioning Birdshot, the more likely we are to get Birdshot as a priority!

The Sight Loss and Vision Survey is a joint initiative between Fight for Sight, The Royal College of Ophthalmologists, The College of Optometrists, the National Institute of Health Research, RNIB and The James Lind Alliance.  It has been set up to find those areas of research that have not yet been identified.  For us with Birdshot, this is really important, as we have a rare disease, and very little research has been carried out to date.  This is our opportunity to get Birdshot (and other rare, auto-immune forms of posterior uveitis) on the national agenda.  Because the survey will be completed by patients, it will have great credibility and it is hoped that funds can then be identified for some of the research needs.

The James Lind Alliance is a non-profit making organisation, funded by the National Institute for Health Research, which will oversee this initiative ensuring the exercise produces an unbiased result, with equal weighting being given to each of the participating groups – so your opinion really will count.

The Sight Loss and Vision Survey will allow you to identify your most pressing questions about the prevention, diagnosis and treatment of Birdshot.

The more Birdshotters that complete the survey the more likely we are to be able to influence the research agenda and receive valuable funding from the government for research into Birdshot – we really do need you to take part.

To complete the survey and learn more about this initiative please visit www.sightlosspsp.org.uk where you will find both the online survey and can request alternative formats – post/fax or telephone.

The survey takes less than 10 minutes to complete so please take this opportunity to represent Birdshot and help change the future of eye research.

Thank you!

1.  What causes Birdshot?

2.  Which part of the immune system becomes disregulated?

3.  How do you re-regulate the immune system without damaging the body?

4.  How can we find less toxic medication that does not adversely affect mental health and quality of life, but preserves vision?

5.  How can we ensure early detection of Birdshot to prevent sight loss?

6.  What are the genetic links and why are several generations of some families affected, and why does it seem to affect mainly Caucasians?

7.  Why is there a ‘spectrum’ of Birdshot?

8.  Why do different people respond differently to different medication regimes?

9.  Why is Birdshot treated systemically with toxic medications which adversely affect mental health and quality of life, when it seems to be confined to the eyes?

10.What does the link to HLA A29 mean in relation to treatment?

11.  What is the risk/benefit analysis of toxic treatment to prevent blindness versus blindness?

12.  What are the long term costs to health and social care of blindness which could have been prevented through the use of off license or off label medications?

13.  Is Birdshot best treated by ophthalmologists or should a clinical specialism of immunology be developed?

14.  Can holistic therapies such as acupuncture, meditation, hypnotherapy help in preventing or treating Birdshot?

15.  Can supplements, such as vitamin D or other therapies treat Birdshot less toxically than current medications?